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National Guidelines for Internet-based STD/HIV Prevention – Executive Summary – March 2008.doc

National Guidelines for Internet-based

STD and HIV Prevention:

Accessing the Power of the Internet for Public

Health

Guidelines for Internet-based Partner Notification

Guidelines for Internet Outreach

Guidelines for Health Communications

March 2008

National Guidelines for Internet-based STD/HIV Prevention – Executive Summary – March 2008.doc

Executive Summary

Accessing the Power of the Internet for Public Health: Guidelines for Internet-based

STD/HIV Prevention, hereafter referred to as The Guidelines, is a user-friendly document

developed to aid health departments and community-based nonprofit organizations use

the Internet as a tool for the control and prevention of STDs including HIV. The

Guidelines focus on three distinct types of Internet activities: Internet-based Partner

Services (IPS), Outreach, and Health Communications. These three activities were

chosen based on their current use in the field (IPS), and the overarching nature for which

other online activities derive (Outreach and Health Communications). While IPS is a

discrete interaction with a trained Internet-Disease Intervention Specialist, STD/HIV

outreach and health communication activities carried out online are intended to be broad

reaching.

Internet-based Partner Services (IPS)

Rooted in traditional Partner Notification, IPN is the process of using the Internet to

conduct or enhance the method of notifying a person of their potential exposure to an

infectious disease. As trends in sex-seeking opportunities adapt to new technological

advances, IPN is particularly useful in contacting individuals that may otherwise be

unreachable except for screen names, e-mail addresses, or other Internet aliases.

Measures to ensure confidentiality, ethics, and computer security are essential precursors

to conducting IPN. The Guidelines present several issues, and possible solutions, to

consider prior to attempting IPN.

It should be noted that The Guidelines have adopted the term partner services as a

replacement for the term partner notification. This was done for two reasons. Foremost,

the term partner services encompasses a broader definition, one that captures the broad

array of services being offered beyond partner notification, such as the provision of

referrals, follow-up, testing for other STDs including HIV, vaccination for hepatitis, etc.

Additionally, the term is being used so that this document is consistent with the new,

Centers for Disease Control and Prevention (CDC) partner services document, which

integrates guidelines for partner services for HIV and other STDs into a single set of

recommendations and replaces the CDC’s 1998 HIV Partner Counseling and Referral

Services Guidance and the Partner Services module of the 2001 Program Operations

Guidelines for STD Prevention.

Internet-based Outreach

Careful observation of the culture of the online community is crucial for online

outreach. Each Internet community may have different clientele with unique STD/HIV

risk behaviors, or varying standards for permitting health educators and health messages

on their website or online community. As such, it is important to create guidelines for

online outreach specific to your individual program or agency to ensure consistency in

approach. The Guidelines offers tips on creating an online identity and suggests elements

to be included in your program or agency-specific guidelines.

National Guidelines for Internet-based STD/HIV Prevention – Executive Summary – March 2008.doc

Health Communications

STD/HIV-related health communications on the Internet should be a complementary

activity to IPS and outreach. At the very least, every program or agency needs to have a

website. The passive health-information seeker may be more inclined to view health

information on a website than to engage in dialogue with an actual person from a health

department or community-based organization, either in person or online. Having a well-

developed website for your program or agency can also add credibility to other online

activities, such as IPN and outreach. In addition to tips on developing a website, The

Guidelines highlight traditional health communications tools, such as banner ads, and

expands to include emerging technologies to be considered, such as mobile devices and

audio/video. The Guidelines also provides examples of how these tools can be translated

for use in a virtual environment.

The virtual environment is fluid, constantly shifting, and changing. Websites popular

today may lose their core audience and become cliché tomorrow. However, equipped

with the basic elements outlined in The Guidelines, your program or agency will have the

necessary skills to remain relevant in the realm of Internet-based STD/HIV prevention

activities.

Should you need help or more information regarding

any section of the guidelines, please contact NCSD

at (202) 842-4660 or [email protected].

SUGGESTED CITATION:

National Coalition of STD Directors. (2008, March). National Guidelines for Internet-

based STD and HIV Prevention: Accessing the Power of the Internet for Public Health.

Washington, DC: Author.

National Guidelines for Internet-based STD/HIV Prevention – Executive Summary – March 2008.doc

Introduction

Background

Access to the Internet is ubiquitous in the United States and research has shown it to

have an impact on sexually transmitted disease (STD) transmission. As the use of the

Internet and other technologies continues to grow, many program areas turned to the

National Coalition of STD Directors (NCSD) and the Centers for Disease Control &

Prevention (CDC) for guidance on how to use the Internet as a tool for the control and

prevention of STDs including HIV.

Because of these requests for direction, an effort was initiated to bring together all

those who are conducting STD prevention online to create guidance based on their

successes and their mistakes. In acknowledging their collective knowledge and

experience, the wheel was not reinvented but rather a document was created that will help

other programs initiate and conduct successful Internet efforts and avoid common

mistakes.

Objectives

In creating this document, NCSD, CDC, and its many partners had two objectives.

First, this is an important, initial effort to document what is known nationally about

promising practices for using the Internet for the control and prevention of STDs.

Second, this is an important first effort to establish a baseline of operating procedures that

will help assure consistency in the quality of services and management of risk related to

these services. The aim is to create a useful and user-friendly document that is helpful to

state public health departments and community-based nonprofit organizations that want

to begin using the Internet or want to expand or improve their current Internet efforts.

Levels of Guidance

Because the use of the Internet for the control and prevention of STDs is still new,

there is a limited amount of evidence to suggest any one approach or procedure is better

than any other. Every organization using the Internet is having different degrees of

success and, as far as we know, continuing to learn and adapt approaches as needed.

The guidelines included in this document represent two levels of practice. We chose

these levels because we believe we have enough experience in some areas to recommend

preferred practices. In other areas, there are too many options to choose from and still

more options being created all the time.

• Framework Level: Preferred practice for the way to approach something; lays a

foundation based on good experience. This level applies to the guidelines included for

Internet Partner Services and Internet Outreach.

National Guidelines for Internet-based STD/HIV Prevention – Executive Summary – March 2008.doc

• Recommendation Level: Optional practices based on initial exploration or

experience; a place to begin from or move toward. This level applies to the guidelines

included for Health Communications on the Internet.

Guidelines Development Process

A work group led by NCSD and the CDC’s Division of STD Prevention (DSTD) planned

and coordinated the guideline development process.

The content for these guidelines was

developed with the participation and input of a wide range of professionals who work in

STD and HIV control and prevention across the United States. Stakeholders with various

levels of Internet-based STD/HIV prevention knowledge and experience were invited to

the table in order to ensure that the document was written for a broad audience in the

most comprehensive and cohesive way. Invitees represented those programs with the

most experience and expertise in this field, those programs that wanted to develop and

implement their own programs but did not know where to begin, and those programs with

little or no knowledge of and/or experience with the Internet and how it could be used as

a prevention tool. Approximately 30 invitees from 20 different jurisdictions participated

in a 3-day meeting in Washington DC, June 27-29, 2006. The focus of the initial meeting

was to develop the key concepts, approaches, practices, and procedures that would be

included in the guidelines. Following the preliminary meeting, participants convened in

small working groups to further develop the detailed content for the guidelines. Protocols

were outlined and developed and a smaller group of participants was reconvened in

Washington DC for two days, January 10-11, 2007, to fill in gaps, make additional

decisions, and outline future steps. Finally, various contributors spent countless hours

writing, compiling, and editing the documents. Draft versions of the documents were

shared with programs with little or no Internet-based prevention experience for comments

and feedback. Responses from the programs were incorporated when applicable and

possible. This is a living document that was put through a rigorous review by a medical

editor. Prior to the release of the final document it will be vetted to staff in the Office of

the Director of the Division of STD Prevention at the CDC and approved by the Board of

the National Coalition of STD Directors. What you have before you is the incredible

work of many dedicated individuals.

The completed guidelines are the property of NCSD. NCSD will make them

available through its website and is committed to updating them regularly, based on

lessons learned and as new information about the Internet and other technologies emerge.

Questions about the guidelines and the process by which they were created should be

directed to NCSD.

National Guidelines for Internet-based STD/HIV Prevention – Executive Summary – March 2008.doc

Acknowledgements

Guidelines for Internet-based STD/HIV Prevention, 2007

Development of these guidelines was made possible with funding and staff support from

the Centers for Disease Control & Prevention and National Coalition of STD Directors.

The content has been made possible by the pioneering efforts and expertise of many

individuals. NCSD wishes to thank the following people for their great contribution and

leadership in creating these guidelines.

Contributors

Stephan Adelson, Tai Baker, Thomas Bertrand, Stewart Coulter, Sam Dooley, Daniel

Ehlman, Kevin Farrell, Allison Friedman, Jill Gatwood, Larry Foster, Bruce Furness,

Beau Gratzer, Melissa Habel, Suzanne Haecker, Tracey Hardy, Rachel Kachur, Deb

Levine, Todd Logan, Mary McFarlane, Daniel Melton, Jorge Montoya, David Novak,

Pam Pitts, Amy Pulver, Eric Roland, Jan Scott, Kim Seechuk, Frank Strona, David

Sullivan, Jemima Talbot, Drew Thomits, Karen Thompson, Lyn Trotter, Duane Wilmont,

Dan Wohlfeiler, & Andrew Woodruff

Reviewers

Ann Avery, Anna Bergdall, James Besong, Donna J. Cecere, Dana Cropper Williams,

Daniel Daltry, Amelia M. Hamarman, Jeff Klausner, Amy LaGesse, Sandra Langston,

Jessica Leston, Ed Renier, & Linda Smart-Smith

NCSD Staff Participants

Don Clark, Kelly Mayor, Dana Cropper-Williams

Editor

Deborah Elias

National Guidelines for Internet-based STD/HIV Prevention – Executive Summary – March 2008.doc

Should you need help or more information regarding

any section of the guidelines, please contact NCSD

at (202) 842-4660 or [email protected]

SUGGESTED CITATION:

National Coalition of STD Directors. (2008, March). National Guidelines for

Internet-based STD and HIV Prevention: Accessing the Power of the Internet for

Public Health. Washington, DC: Author.

Guidelines for Internet-based

Partner Services

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

Table of Contents

Page

1. Introduction

2. Background 4

2.1 Types of Partner Services

2.2 Principles of Partner Services

2.3 Field Experiences 6

3. Before You Begin 9

3.1 Legal Authority

3.2 Confidentiality and Ethics

3.3 Access to the Internet and Computer Security 11

3.4 Engagement of Appropriate Stakeholders 11

4. Evaluation of Internet Partner Services (IPS) 12

4.1 Documentation 12

4.2 Special Considerations Regarding Documentation 13

4.2.1 The Creation of Logs Specific for IPS 13

5. Getting Started 14

5.1 Creating Profiles, Screen Names, and E-mail Addresses 14

5.2 Staffing 15

5.3 Training 16

5.3.1 Training for Adjunct Staff 17

5.4 Supervision 17

6. Implementing Internet Partner Services

6.1 Original Interview 17

6.2 Initiating Contact Using IPS

6.2.1 Out of Jurisdiction Considerations

6.3 Types of Notifications 19

6.3.1 Notification via DIS 19

6.3.2 Notification from the Original Patient

6.3.2.1 Personal IPS 20

6.3.2.2 Via Third-Party Sites

6.4 IPS Patient Follow-up 21

6.5 Special Considerations 21

6.5.1 Instant Messaging

7. Future of IPS 22

7.1 Cell Phones

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

7.2 Social Networking Sites 23

8. Summary 23

References 25

Glossary of Acronyms 28

Appendices

Appendix A Examples of Confidentiality Agreements 29

Appendix B Examples of Legal Disclaimer 32

Appendix C Protocol for the use of a stand-alone computer with a DSL line 33

Appendix D Logic Models 34

Example 1. Logic Model Template

Example 2. Logic Model Example

Appendix E Example of Documentation Log 36

Appendix F Checklist for creating program-specific IPS guidelines 37

Appendix G Screen Names and Profiles 40

Example 1. Massachusetts

Example 2. Washington DC

Example 3. Houston, TX

Appendix H Sample e-mails – Traditional Language

Appendix I Sample e-mails – Alternative Language 45

Appendix J Description of Washington DC’s timeframe for sending IPS e-mail 48

Appendix K Documenting IPS in STD*MIS

Example 1. Massachusetts

Example.2. Washington DC

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

1. Introduction

This section of the Internet Guidelines makes recommendations for conducting

Internet-based partner services (IPS), which includes Internet-based partner notification

(IPN), for both STDs and HIV, in virtual settings, such as through e-mail, instant

messaging (IM) and in chat rooms. STD and HIV IPS has been combined into a single set

of recommendations

, because, while programs may have different approaches to Internet-

based STD/HIV work, certain basic programmatic and staff requirements are necessary

for the work to be effective. It should also be noted that this document uses the term

“partner services (PS)”, including IPS, as adopted by the recently revised CDC guidelines

for HIV-STD partner services.

The term “Partner Services” is broad and encompasses

services beyond partner notification (PN); such as STD testing and vaccination

recommendations. Moreover, the term acknowledges that persons with STDs often need the

same array of services as persons with HIV and that creating distinctions between the two

does not serve the best interests of public health or the individuals involved.

The recommendations in this section are based on program experience

2-8

, lessons

learned from pioneers in the field of IPS, and input from several state health departments

and community-based nonprofit organizations. Most of the data driving these guidelines

are based on using IPS for infectious syphilis cases. Although these guidelines can easily

be modified to include other STDs – such as Chlamydia, gonorrhea, or HIV – and indeed

some programs are already using IPS for these infections, the data are not currently

available to warrant global guidelines for all STDs.

IPS adheres to the same standards and ethics as traditional PS, and the

recommendations presented in this document should be used in conjunction with the

CDC’s STD Program Operations Guidelines

and the CDC’s HIV Counseling, Testing,

and Referral Guidelines.

10-11

Principles from both documents apply directly to IPS.

For those jurisdictions that plan to implement IPS, these guidelines are intended to

assist program managers in developing their IPS activities. For those jurisdictions that

have already developed specific policies for IPS, these guidelines are intended to enhance

existing practices. Agencies may have internal policies or electronic barriers, such as

firewalls, that may impede implementation of Internet-related activities. It is

recommended that agencies review state and local laws and health department or agency

policies and consult with information technology (IT) departments prior to implementing

IPS activities.

2. Background

PS, as traditionally conducted, has been endorsed by the CDC and National Coalition

of STD Directors (NCSD) as an effective public health strategy to reduce STD and HIV

transmission and associated morbidity. PS attempts to inform people of their potential

exposure to STDs, and to refer them into care, thereby breaking the chain of infection and

reducing morbidity.

The Internet is a powerful medium for communication and, as such, is a valuable tool

for facilitating STD/HIV PS. Research has shown the Internet to be a venue for STD

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

transmission

12-14

as well as for disease control and health promotion.

15-17

Access to the

Internet has become nearly universal for most Americans,

and program areas and health

departments have been encouraged to incorporate the Internet into their prevention

efforts.

With the rise of Internet-based social networking, dating, and sex sites,

anecdotal evidence suggests that increasing numbers of men who have sex with men

(MSM) as well as other high-risk populations are meeting online to arrange anonymous

sexual encounters. As a result, individuals who are newly diagnosed with STDs/HIV

may know only the screen names and/or e-mail addresses of their sex partners.

The Internet represents a relatively new medium for conducting PS. IPS is the

process of using the Internet to conduct or enhance the process of notifying a person of

their potential exposure to an infectious disease. IPS should augment traditional methods

of PS, specifically provider referral, where appropriate. Partner-locating information is

sometimes limited to an e-mail address or screen name/profile on an Internet site, making

the use of the Internet the only viable option for providing appropriate STD/HIV partner

services in these cases.

2.1 Types of Partner Services

Three primary strategies can be used to notify partners of possible exposure to STDs

or HIV infection: Provider, Self, or Contact referral. Often, more than one strategy may

be used to notify different partners of the same infected patient. The strategy will depend

on the particular patient, the particular STD, and partner circumstances. For example, a

patient with an STD may feel that he or she is in a better position to notify a main partner,

but would prefer that the Disease Intervention Specialist (DIS) notify other partners.

2.2 Principles of Partner Services

Current national STD and HIV program guidelines share core principles for the

provision of STD partner services and HIV partner counseling and referral services, and

these principles remain applicable when using the Internet for PS. Listed below is the set

of principles as described in the newly revised Guidelines for HIV-STD Partner

Services.

• Client-Centered: All steps of the partner services process should be delivered in a

client-centered manner, i.e., tailored to the behaviors, circumstances, and special

needs of the person being served.

Tip from the field

Both the Division of STD Prevention and the Division of HIV Prevention at

the U.S. Centers for Disease Control & Prevention encourage the use of the

Internet for STD/HIV prevention including IPS.

See the September 13, 2005 Dear Colleague Letter:

http://www.cdc.gov/std/DearColleague9-13-2005.pdf

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

• Confidential: The confidential nature of partner services is essential to its success.

This also applies to special protections for data collected as part of the process.

• Voluntary

and non-coercive: Participating in partner services is voluntary for both

the infected person and his or her partners and cannot be conducted in a coercive

manner.

• Free: There is no charge to infected persons or their partners for partner services.

• Evidence-based: Partner services activities should be evidence-based to the extent

possible and require knowledge, skill, and training.

• Culturally, linguistically, and developmentally appropriate: Partner services

are to be delivered in a nonjudgmental manner appropriate to the cultural,

linguistic, and developmental characteristics of the person being served.

• Accessible and available to all: Partner services must be accessible and available

to all infected persons regardless of where they are tested or diagnosed and

whether they are tested confidentially or anonymously. Due to the chronic nature

of HIV infection, it is also necessary to assure that partner services for HIV are

available in an ongoing manner.

• Comprehensive: Partner services are part of an array of services that are integrated

to the greatest extent possible for persons with HIV or other STDs and their partners.

2.3 Field Experiences

Following are descriptions of experiences from project areas that have developed and

implemented IPS programs. These jurisdictions saw an increase in Internet sex partners

and adapted their programs to meet the needs of their patients and to address this new

venue. Often the only locating information available to the DIS was an e-mail address or

screen name. These programs developed procedures and protocols for IPS, learned what

worked and what didn’t, and paved the way for others. If these sex partners had not been

contacted via the Internet, they would not have been notified of their possible exposure to

an STD.

San Francisco, California

In 1999, San Francisco conducted a case control study of 7 early syphilis

cases that were linked to an online chat room. The mean number of partners per

index case was 5.9, and locating information for the sex partners was limited to

screen names. Using the Internet to conduct PN resulted in 42% of the named

partners being notified and confirmed as having been tested.

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

In 2003, San Francisco reported that 20.9% of 151 syphilis cases were able to

provide only e-mail addresses as locating information for a total of 44 sex

partners. Using the Internet, San Francisco Department of Health staff were able

to locate 15 (34%) of the Internet sex partners and confirm that they were

screened and treated, if necessary.

San Francisco had more success reaching

those contacts who were first contacted by the original patient (OP) (26/44), with

a follow-up by the DIS, as compared to the DIS making first contact.

Los Angeles, California

Two cases from Los Angeles were reported in a 2004 Morbidity and Mortality

Weekly Report (MMWR) and exemplify how IPS can be an effective, patient-

centered approach to PN. In Los Angeles, a high percentage of MSM who were

diagnosed with syphilis reported meeting sex partners online. The first case cited

an OP who reported 134 male Internet sex partners. He was able to provide the

DIS with 111 e-mail addresses and 23 telephone numbers for PN. The Los

Angeles County Department of Health Services (LACDHS) sent e-mails to all

111 contacts; 29 persons (26%) responded to the e-mail and were contacted by

local DIS.

In the other syphilis case, the LACDHS asked the OP to send an e-mail to his

16 male Internet-sex partners. Of the 16 sex partners, the OP sent e-mails to 13,

notifying them of their exposure to syphilis and indicating the health department’s

desire to refer them to STD clinics for testing and treatment, if necessary. Seven

(44%) responded and made arrangements to be tested; suggesting that OP

involvement in PN via e-mail may improve partner-response rates.

This MMWR

also reported that instant messaging (IM) can have similar success for PN.

Philadelphia, Pennsylvania

In 2000, the city of Philadelphia experienced a significant increase in primary

and secondary syphilis cases. Through active case management, two infected

individuals identified anonymous sex partners met through the Internet chat

rooms. These individuals could only provide e-mail addresses for former sex

partners. A protocol was developed and implemented to conduct IPS. All DIS, as

well as clinical and support staff, were informed of these efforts to insure proper

responses to calls generated from IPS. One IPS case resulted in a 60% (3/5)

response rate from partners, suspects, and associates. A second investigation

resulted in a 40% (2/5) response rate from suspects and associates.

Minnesota

The Minnesota Department of Health also experienced increased cases of

syphilis among MSM. Investigation of these cases revealed a cluster of 176

individuals at risk for HIV, syphilis, gonorrhea, and/or Chlamydia infection. In

this cluster, 61% (108) of the individuals stated they used the Internet to meet sex

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

partners. Of these, 50 were locatable only by an e-mail address or screen name.

Seven (14%) were out of jurisdiction (OOJ) cases. The remaining individuals

were sent e-mails from the health department. Of those contacted, 60% (32)

responded to IPS efforts and 26% (13) did not respond at all.

Chicago, Illinois

Howard Brown Health Center (HBHC), a community-based organization

(CBO) in Chicago, conducted a comparative analysis of PN initiated via the

Internet versus PN via the telephone, the latter being the traditional method of PN.

A retrospective case audit was performed for all syphilis cases interviewed by

HBHC DIS between January 2005 and September 2006. During that time, there

were 304 cases of syphilis followed by HBHC, and these cases produced 368 sex

partners. All were included in the overall analysis. IPS was initiated for 190

partners (52%) and telephone PN was initiated for the remaining 178 (48%).

Telephone PN was significantly more likely to result in contact between the

exposed individual and the DIS. When the analysis was restricted to only those

partners contacted regardless of method, there was no significant difference in

final disposition (whether or not partners were brought in for testing and

treatment, if necessary). Of the 190 sex partners that were contacted through IPS,

30 were found to be infected and brought to treatment and 121 who may not have

otherwise had any contact with HBHC, or known of their potential exposure, were

provided counseling and referral services.

Boston, Massachusetts

In a national IPS study performed by The Fenway Institute, Fenway

Community Health looked at the acceptability of IPS among MSM. A total of

1,848 MSM were recruited online via an Internet sex partner-seeking website

between October and November 2005. This study recommended that health

departments using IPS use clear and culturally sensitive language when

communicating via e-mail. Participants attached a high level of importance in

receiving a variety of information in notifications: e-mails informing them that

they had sex with someone infected with an STD, linking them to education about

the STD, linking them to information on where to get tested for the STD, triage to

public health specialists familiar with the STD, as well as access to phone

numbers or links to a customer service representative to confirm the e-mail’s

authenticity. More than 92% of participants reported that they would use IPS in

some capacity (i.e., use the department of public health to notify sexual partners

using IPS, notify sexual partners themselves via IPS, or do both) to inform their

sexual partners if they were to become infected with an STD in the future. The

study concluded that IPS should be considered an acceptable tool to decrease

rising STD and HIV rates among MSM who use the Internet to meet sex

partners.

Based on the above examples, when the only locating information available for a sex

partner of an infected individual is an e-mail address or screen name, conducting IPS can

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

result in partners being notified, then responding to notifications, and, ultimately, being

tested and treated for STDs. Additionally, when used after other methods of contact have

failed, IPS can increase the chance of eliciting any sort of a response. IPS, therefore,

should be viewed as an additional tool for effective and patient-centered PN, and not a

separate or different practice.

3. Before You Begin

3.1 Legal Authority

Before implementing IPS, programs should adhere to applicable state/local laws,

regulations, or statutes. A program should assure that policies and procedures developed

(e.g., IPS methods, patient confidentiality, ethical conduct of employees) are in

compliance with these laws, regulations, and statutes. The HIPAA Privacy Rule allows

protected health information to be disclosed by those public health authorities who are

mandated to notify individuals of their potential exposure to a communicable disease in

an effort to prevent the further spread of disease during the course of a public health

investigation. Prior to beginning IPS, programs should review which STDs fall under

this rule.

3.2 Confidentiality and Ethics

All PS activities must adhere to standards of confidentiality and ethics. These

standards do not change with IPS. Agencies conducting IPS are expected to have a

confidentiality policy that specifically covers Internet communication with patients and

should include consequences for violations of the policy. These confidentiality

agreements should extend beyond staff conducting IPS and includes IT staff and any

other staff that may view or have access to confidential information. Such agreements

should include statements about the consequence of personal use of health department

accounts, e-mail addresses, and health department profiles, as well as statements related

to IT access to confidential e-mail or IM. Prior to implementation, agencies need to

ensure their HIPAA compliance, use of firewalls, security of wireless networks (if used),

and that a policy about permitting staff to conduct IPS from their home computers or

laptops is in place. See Appendix A for examples of confidentiality agreements.

Screen names, e-mail addresses, HIV status, and/or any personal information are

considered to be identifying information and as such are held to the same levels of

confidentiality as a patient’s first name and surname. Printed documents, such as logs,

reports, or transcripts containing screen names or e-mail addresses are to be stored in

locked areas. Under no circumstances should staff share any information about IPS

Tip from the field

IPS should be viewed as an additional tool for PN

and not a separate or different practice.

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

patients with anyone other than affiliated PS staff. E-mail groups and list serves should

not be used for PS because patient confidentiality cannot be maintained.

Staff members need to be trained on IPS policies including what information can be

shared and/or discussed over the Internet with infected patients and their sex partners.

Some programs require all outgoing e-mails to have a legal disclaimer. See Appendix B

for an example.

Reasonable efforts should be taken to ensure that e-mails are sent to the intended

recipients. The ubiquity of free, password-protected e-mail accounts, screen names, and

IM accounts help minimize concerns that erroneous individuals be contacted through IPS.

It is important to acknowledge that the potential exists for someone to share an e-mail

account or screen name with another person (if they are a couple, for example), but

anecdotal evidence from experienced programs have found this not to be the case with

the vast majority of e-mail addresses and screen names that are reported to them.

Common concerns about protecting confidentiality

Programs that are new to IPS or newly considering implementing IPS often have

concerns about ensuring patient confidentiality and the possibility of breaching

confidentiality. The primary concern is that sending an e-mail − especially from an

organization that uses the acronym ‘STD’ in their email address, for example,

[email protected] − will unwittingly breach confidentiality if anyone other than the

intended recipient of the letter views either the letter or the return e-mail address of the

sender. However, few, if any, programs that have been conducting IPS (more than 13

years of combined experience) have experienced these hypothetical scenarios due to the

ubiquity of free e-mail accounts, eliminating the necessity of a shared e-mail address.

Sending an e-mail carries the same risks as leaving a letter on a doorstep. The same risks

exist for both modes of communication, but the public health benefit of notifying

someone of their possible exposure and infection outweighs the small possibility that

confidentiality will be breached.

Furthermore, descriptive details elicited during the DIS interview with the infected

patient (such as race, height, weight, unusual identifying characteristics) should be

sufficient to determine that the correct sex partner is being contacted. DIS should also

obtain detailed descriptive information about the partner’s Internet profile (such as age,

height, weight, HIV status, interests, number and type of pictures, and the town and state

the profile is listed in) as well as the accuracy of the information listed. If IPS results in

the anonymous partner calling the DIS, use of the descriptive information in the profile,

along with the information provided by the OP, may be used to verify that the DIS is

talking to the correct person. With IPS, the experience reported by many STD programs

Tip from the field

Amend confidentiality agreements to include e-mail addresses, screen

names, and other potentially identifying information.

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

is that patient confidentiality can be maintained in the same way that confidentiality is

maintained when conducting PN via the telephone.

3.3 Access to the Internet and Computer Security

In order to conduct IPS, employees will need approved access to Internet sites that are

traditionally blocked including, but not limited to, social networking, dating, or sexually

explicit sites, in addition to the standard resources required as written in the CDC STD

Program Operations Guidelines.

Access to websites, IM programs, and other

communication technologies are essential.

It is critical that IT managers/staff and current program policies and procedures be

consulted regarding issues of security, access to sexually explicit websites, etc. prior to

implementation of IPS. Potential barriers that may prohibit effective IPS are lack of

computer access in clinics, lack of Internet access, lack of computer/Internet knowledge,

slow Internet connections, firewalls protecting Internet-enabled computers from gaining

access to sexually explicit websites, and local policies restricting the use of the Internet

by state and local employees. Procedures securing computer equipment and software

used for IPS should be established as well. Anti-virus and anti-spyware software should

be kept up-to-date and used at all times on computers used for IPS. Some programs may

require a non-networked computer, that is, a computer with Internet access that is

separate from the internal network in order to protect servers and to alleviate IT

networking concerns. See Appendix C for a sample protocol for the use of a stand-alone

computer with Internet access.

3.4 Engagement of Appropriate Stakeholders

Engagement of key stakeholders can determine the success or failure of an IPS

program. Important stakeholders include, among others, the state Health Commissioner,

the Health Department Medical Director, the Health Department Information Technology

Director, the Legal Department, persons who will conduct the IPS, STD/HIV Program

Managers, DIS, and the at-risk communities themselves. Some stakeholders simply need

to be made aware of a program’s intention to proceed with IPS; others should be involved

in the creation of IPS policies.

Health departments and CBOs conducting PS (hereon referred to as health

departments but including all other programs that provide PS) should inform other health

department programs, all partnering agencies, community clinics, CBOs, and agencies

that service impacted communities that IPS is now offered through the health department.

Ongoing communication with these agencies is critical. Often patients will call these

agencies to confirm that the attempt to reach them is valid and the verification can

expedite the time the patient takes to respond to the e-mail notification.

Health departments should also notify all private health care providers of this new

approach to PS. Many individuals may contact their private physician long before

making any attempt to contact the health department. Private physicians can help

validate IPS as a new activity used by the health department. Given that many STD cases

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

are diagnosed in private settings, special emphasis on effective collaboration with private

providers is crucial and mutually beneficial for health care providers, health departments

and patients. Some health departments provide in-service training regarding the health

department’s IPS work to hospitals, health centers, and private providers to help them

understand PS.

4.0 Evaluation of Internet Partner Services (IPS)

As with traditional PS, IPS quality assurance and monitoring must be conducted

through frequent, routine, and standardized evaluation. However, IPS is unique in that

(1) staff will have the ability to access adult-oriented websites and (2) a written record of

all communication between DIS and those they contact will exist. In some program

areas, the ability of staff to access sexually explicit websites at work may not be widely

understood or recognized as an effective means of conducting disease intervention and

may bring unwanted public and/or political fallout. Organizations conducting IPS

activities should have mechanisms in place to ensure that the program is meeting its goals

and objectives and that all related program policies and procedures are being followed.

Evaluation and quality assurance measures are critical to the success of any disease

intervention initiative. STD programs should assess and evaluate their efforts on the

Internet, not only to quantify successes but to avoid any potentially harmful/unintended

consequences.

Logic models are an effective way of clearly outlining the steps and desired outcomes

of IPS and may help in developing evaluation protocols. For examples of logic models,

see Appendix D. The CDC recently released a valuable evaluation manual specific to

STD programs, “Practical Use of Program Evaluation among STD Programs”.

recommend that STD programs use the manual to guide evaluation efforts including the

development of a logic model.

4.1 Documentation

Documentation is vital to the evaluation of PS, and therefore to IPS as well. Quality

assurance activities can include various data collection forms or secure, password-

protected databases, including contact and referral logs, activity report forms, and activity

observation tools. See Appendix E for a sample log.

Agencies may want to consider collecting printed or electronically stored transcripts

of IPS activities, including e-mails or IMs sent and/or received, when feasible (some

Tip from the field

Obtain a copy of the manual:

Practical Use of Program Evaluation among STD

Programs

http://www.cdc.gov/std/Program/pupestd.htm

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

websites restrict the ability to cut and paste or otherwise save chat room or messaging

text, one way to circumvent this barrier is “printscreen”, a keyboard option located in the

upper right hand corner of PC keyboards, and then “Paste” in a document). Transcripts

can be used for qualitative analysis or to determine factors that influence the high-risk

behaviors of individuals online. Monitoring this information will inform evaluation

efforts, ensure that protocols and guidelines are being followed, and indicate when

program modifications are necessary.

Process measures are those activities that are conducted during implementation of a

program and include such things as developing program-specific guidelines and

providing IPS training to relevant staff. Outcome measures capture the end effect of your

efforts and include items such as the number of individuals contacted, number who

responded to IPS, number referred to services, number tested, number who test positive

for the infection they may have been exposed to, and/or number of individuals treated.

These measures should be captured by staff on interview record forms.

Below is a list of some of the ways in which IPS programs can be evaluated for quality

assurance and effectiveness.

• Require consistent and accurate data collection

• Develop an evaluation and quality assurance process for compiling and analyzing

data and for documenting and reviewing outcomes

• Provide IPS staff with evaluations and feedback

• Develop a means for patients to provide feedback

• Define methods for assessing progress toward stated process goals/outcome

objectives

• Develop an ongoing system for program improvement

4.2 Special Considerations Regarding Documentation

Many programs have faced various challenges documenting IPS cases and efforts.

Different programs document their IPS efforts in various ways. Additionally, not all

areas use STD Management Information System (STD*MIS; a free database application

provided by the CDC to state and local STD control programs for use in managing their

disease control programs).

4.2.1 The Creation of Logs Specific for IPS

Tracking Internet partners through STD*MIS is possible, although it requires that

data be entered in a unique and timely manner. We have included examples on how

Massachusetts and Washington DC track Internet partners through STD*MIS in

Appendix K. It is recommended that programs create a separate log or spreadsheet that

will allow investigation of Internet partners to be initiated and tracked until either enough

locating information is obtained to put into STD*MIS or investigation ceases. An

example of such a log/spreadsheet is located in Appendix E.

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

5. Getting Started

While there are common considerations that cover all PN, including IPS, there are

also some unique considerations that must be addressed before implementing IPS as

listed below. Refer to Appendix F for a more complete checklist.

It is important to remember that the websites where patients meet sex partners and

from which IPS is being conducted do not have a public health mission. Most of them

are private businesses whose primary mission is to generate revenue. It is possible that a

health department or CBO presence will be perceived as a threat to that mission. When

conducting IPS through a website, it is important to be aware that you are a member of

the community and are subject to the rules and regulations of the website. It is

imperative to be aware of such rules and regulations pertaining to IPS prior to joining the

site.

Rules and regulations regarding Internet interventions will vary from site to site.

Some websites will allow one type of Internet effort and not another, for example, they

will allow passive outreach, but not IPS. Other websites may require separate profiles for

IPS and outreach and will state that they should not be used interchangeably. Being

aware of the rules and regulations for each website and following those policies will help

to ensure that Internet efforts that are conducted within private businesses are preserved.

5.1 Creating Profiles, Screen Names, and E-mail Addresses

At this stage it should be determined what computer stations and Internet accounts

will be used to send and receive e-mails for IPS. Jurisdictions that have already

implemented IPS use a dedicated department e-mail account, work-specific e-mails, or

have established state profiles for IPS communication. For example, Howard Brown

employees who conduct IPS directed at sex partners with e-mail addresses each use their

own specific work e-mail addresses, such as [email protected]

. On sites

that require profiles (e.g., Manhunt), Howard Brown uses the profile name

HBHCinChicago. Washington DC uses the same moniker, dcSTD, for all Internet-based

efforts including screen names, profile names, and e-mail addresses (see Appendix G).

Personal e-mail accounts and profiles should never be used for IPS.

Tip from the field

In addition to documenting IPS efforts in STD* MIS,

some program areas have created additional forms to monitor IPS.

See Appendix E for an example.

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

When creating a profile, the official health department logo should be used as the

account picture and other identifying information should be filled out respective to

ISP/website protocol for health departments. Some websites may require certain

information be contained within your profile. For example, Manhunt recently created a

standard logo for all profiles conducting IPS or outreach in order to provide a validation

of legitimate health-related profiles (see Appendix H).

Programs need to be aware that different websites have different options that may

help maintain or potentially breach confidentiality. For example, on www.bgclive.com

(Black Gay Chat), after creating a profile, it is necessary to choose "My Account

Options" and then choose "Turn Who I Recently Visited Off." Otherwise, when an

Internet partner's profile is viewed, it will document the health department’s visit on that

individual’s profile.

Sometimes an e-mail can be sent to an individual within the website. This type of e-

mail system is called a proprietary e-mail system and is used by sites such as Manhunt,

Adam4Adam, Men4Now, and MySpace.

Anecdotal evidence from experienced programs has found that including specific

disease information in proprietary e-mail systems is safe and acceptable to the recipients.

In general, proprietary e-mail systems are password-protected, and members of websites

designed specifically for sex seeking typically have individual accounts. If members

choose to share an account with another person, it is typically because they are in a

relationship and looking for group sexual encounters.

5.2 Staffing

Staffing for IPS is dependent upon the organizational structure, program size, STD

morbidity, and appropriateness of using IPS for target populations. IPS must be

conducted by staff members, typically DIS, who are trained in traditional PN techniques

(i.e., have taken courses such as Introduction to STD Intervention and Advanced STD

Intervention) and have experience conducting traditional PS. An experienced DIS who is

already well-versed in traditional PS methods, protocols, and principles will ensure that

basic PS practices are adhered to while conducting IPS.

Other important qualities for DIS implementing IPS should include familiarity with

computers, the Internet, and with social networking sites (SNS). DIS should also be

acquainted with online populations, including the language, etiquette, and culture of chat

rooms and other current, popular sites. They should have experience with the language

and culture of the populations offline (e.g., African-Americans, youth, or MSM).

Tip from the field

IPS should be conducted from designated department

e-mail accounts and profiles, and never from personal

e-mail accounts or profiles.

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

Professionalism and the ability to separate personal from professional activities are

essential.

Given that IPS is a new area for disease intervention, the STD program manager may

want to establish this function as a lead position, using an experienced DIS. As increased

use of this new venue for disease intervention increases over time, this function may

become routine for all DIS within a program.

5.3 Training

Effective implementation of IPS comes from the combination of a good candidate,

appropriate supervision, and a comprehensive training program. For IPS to be

successful, STD/HIV programs will need to provide staff with additional training specific

to using the Internet for PS. DIS should be provided with ongoing support because this

area is still developing, new technologies are emerging, and websites are constantly

changing.

Following is a list of trainings that may be necessary to implement IPS:

• Health department-specific IPS policies and procedures. Some examples include:

- Revising the interview format to include questions about on-line partners.

- Setting up online profiles.

- Reviewing standardized online correspondence and discussing any

additional interaction between DIS and patients.

- Going over scenarios other programs have experienced doing IPS.

• Basics of the Internet – including but not limited to: types of web-based networks

(Internet service providers, websites, chat rooms, IM services, etc.) and Internet

terminology and iconography.

• Training on chat rooms including chat room terminology and etiquette and

finding relevant chat rooms and named partners.

• Cultural competency training, including how and why people use the Internet for

sex seeking.

Tip from the field

Massachusetts Department of Public Health’s STD Division has found that

having one experienced DIS conduct IPS was preferable to having all DIS

perform IPS. They believe that centralizing this function will assist with

quality assurance.

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

• Internet safety and confidentiality - IPS staff should understand the different

security and confidentiality levels of the various modes of online communication,

such as e-mail (including proprietary e-mail) and IM.

• Hands-on website experience.

New IPS staff should spend time exploring websites frequented by target populations

in order to gain familiarity with how these sites work and to understand these sites from a

public health perspective. Surfing the Internet should be an ongoing activity, as more

websites will be pulled into the process once all DIS begin asking all patients about

Internet partners.

5.3.1 Training for Adjunct Staff

Other program staff should also attend trainings on IPS as needed. For example, all

staff answering phones should be instructed on how to answer calls from patients

contacted via the Internet. Front-line staff, such as reception or check-in staff at STD

clinics, should also know how to interact with patients contacted through IPS.

5.4 Supervision

Effective supervision will reduce the likelihood of error, demonstrate the program’s

commitment to quality assurance, and reduce risk of misuse of the Internet.

Supervisors should have access to all exchanges made between DIS and the initiated

partner, as well as interview records and IPS logs. Supervisors should maintain a list of

all IPS-related passwords and screen names. Additionally, support regarding specifics of

online interactions should be offered regularly, such as during DIS meetings.

6. Implementing Internet Partner Services

6.1 Original Interview

As with traditional PS, the index patient, also known as the original patient (OP), is

an individual who has a laboratory-confirmed STD and, based on program policies, will

be interviewed by DIS and offered PS services.

The CDC’s Program Operation Guidelines states:

“While interviewing the patient, the DIS should make every attempt to

enlist the patient as a resource, making it clear that the information the

patient provides will be confidential and very helpful to the DIS, the

patient, and the patient’s partners. The DIS can incorporate elements of

patient-centered counseling by acknowledging and treating the patient as

a partner in reducing additional STD in their community. The partnership

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

should be clear to the patient.”

(Partner Services section, p. PS-5)

http://wwwdev.cdc.gov/std/Program/partners.pdf or

http://wwwdev.cdc.gov/std/Program/partner/3-PGpartner.htm

During the interview, DIS should ask OPs whether or not they meet sex partners

online. If the OP meets partners through the Internet, ask for the websites used and for

screen names, e-mail addresses, and regular descriptive and locating information for all

partners. It may be helpful to prompt the patient by naming a few popular sex venues,

including websites, bathhouses, and public sex venues, to let the patient know that the

DIS is familiar and comfortable with such venues. For case management and future

disease surveillance purposes, it is important to acquire the OP’s own screen names and

e-mail addresses. This will assist in case management as partners name back the OP in

cluster interviews. Furthermore, in future cases, if the OP’s screen name is provided as a

partner, complete locating information will already exist in the database and IPS will not

need to take place—traditional PN can instead be initiated.

6.2 Initiating Contact Using IPS

Prior to initiating IPS, DIS should attempt to obtain the geographic location of the

individual they are trying to contact. This is often listed in the individual’s online profile.

Knowing the geographic location of the sex partner allows the DIS to provide appropriate

referral information (i.e., clinic locations, clinic times). If a partner can be located based

on an address or telephone number, those avenues should be used prior to conducting

IPS. IPS is traditionally conducted if other methods fail to elicit a response or if it is the

only information available. Some programs are looking to use IPS concurrently, such as

contacting a partner by phone, while simultaneously trying to contact the same person

through IPS. Data regarding this practice are not yet available.

6.2.1 Out-of-Jurisdiction Considerations

E-mail addresses and screen names with an identified geographic location outside of a

program’s jurisdiction will require that an “out of jurisdiction” (OOJ) field record be

initiated. Because the Internet does not adhere to jurisdictional boundaries, traditional

methods of handling OOJ contacts may need to be adjusted when conducting IPS.

Geographic boundaries are not often able to be adhered to in IPS. Rather, it is important

to discuss the situation with the STD program in the jurisdiction in which the partner is

known or alleged to reside to understand that jurisdiction’s protocols for handling IPS.

Until more is known about the standards of practice in each state, or national guidelines

are developed for OOJ IPS, these situations will need to be handled on a case-by-case

basis. In areas where patients and partners frequently cross jurisdictions, it is

recommended that STD programs in these areas work together to develop standard

protocols for addressing OOJ-IPS partners. For example, the New England states have

formed a regional agreement with Massachusetts serving as the lead project area and

performing IPS for all states except for New Hampshire, which has its own IPS program.

In these circumstances, Massachusetts sends an e-mail to the OOJ partner on behalf of

the applicable jurisdiction. The e-mail contains the contact information of a DIS in the

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

relevant jurisdiction (where the partner resides). Massachusetts will then create a file for

this case but will not enter it into STD*MIS. Rather the partnering state should enter the

case into their case management system.

In other areas, Washington DC, for example, the health department will contact the

OOJ and will transfer the case, if the jurisdiction is able to conduct IPS. If not, DC will

offer to conduct IPS on behalf of the jurisdiction. Additionally, DC will discuss IPS with

the OP in order to determine confidentiality. With the jurisdiction’s permission to

proceed and

with the consent of the OP, DC initiates IPS and signs any correspondence

with the DC DIS contact information.

6.3 Types of Notifications

6.3.1 Notification via DIS

This notification strategy allows DIS to take responsibility for notifying partners for

whom they have an e-mail address, screen name, or IM account.

Currently, there are two ways in which e-mails notifying potentially infected partners

of their exposure are written. The first way mimics traditional PN referral letters and is

more conservative and lacks specific exposure information. These messages stress the

importance for immediate communication between the potentially infected individual and

the DIS due to “an urgent health matter” (see Appendix H for traditional e-mail

examples). The second method is more specific and provides more detailed information

about why the partner is being contacted. These messages state that the partner may have

been exposed to an STD and urge the partner to contact the DIS or to seek medical care

ASAP. This method is typically used only on websites with proprietary e-mail systems

or on sex or dating sites and not for IPS sent to general e-mail accounts; although a few

programs, such as DC, use this type of language for all IPS (see Appendix I for

alternative e-mail examples).

In general, initial IPS messages should consist of a brief message encouraging the

partner to contact the DIS either by e-mail, telephone, or face-to-face.

Subsequent attempts to contact the partner may include, where appropriate, additional

information to increase the sense of urgency; request for the individual’s consent to

receive information via IPS, disease-specific exposure information, etc.

At a minimum, all IPS messages must include the following information: name,

program or health department affiliation, office address, office phone number, and times

the DIS can be reached in the office. It may also be helpful to mention that leaving a

message on voicemail is confidential, if this is indeed the case. All correspondence

should include directions on how the patient can confirm the contacting individual’s

identity, such as including the name of a supervisor and his/her telephone number.

Additional referral information may be included, such as: instructions to present the IPS

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

message at a medical care location, as well as the names, addresses, and phone numbers

of testing and treatment sites, and the hours of service.

All IPS letters should be sent from a health department/CBO e-mail address or

profile. The ability to confirm that the IPS is not a hoax but a real and urgent matter is

very important for the patient. Whenever possible, messages should be accompanied by

an automatic request for notification when the message is read.

Programs must also determine the allowable number of times a patient may be

contacted. Experienced programs recommend no more than three attempts to initiate

contact with the patient. Some websites have policies regarding the number of times a

health department or CBO may contact their members. Manhunt’s policy is that no more

than two attempts to initiate communication with a patient be made per disease exposure

event (see http://www.ncsddc.org/docs/FinStgdWorkingManhunt.pdf

). It is important to

remember that each situation may require different strategies (see Appendix J for a

detailed description of when DC sends IPS e-mails).

San Francisco has reported great results, anecdotally, by having computers in the

interview rooms. If a patient mentions that he/she meets partners on an Internet site on

which the health department has a profile, the DIS will immediately log on to that site

and ask the patient to help the DIS find their sex partners. DIS then offer to send an IPS

e-mail to all sex partners via the city clinic’s profile without mentioning the OP, though,

on occasion, the OP will want to send IPS emails to their partners from their personal

profiles. They have found that this approach helps to normalize the use of the Internet as

a way to find partners.

6.3.2 Notification From The Original Patient

6.3.2.1 Personal IPS

This notification strategy allows for the infected individual to notify their partners of

their exposure to an STD via IPS. With assistance from DIS, infected patients will

receive support and guidance about how to contact their sex partners on the Internet.

Patient-initiated IPS messages should include the name and contact information of the

DIS to contact at the health department. Some health departments have found IPS to be

more successful when the OP makes first contact with named partners, with follow-up by

DIS, as compared to the DIS making first contact.

6.3.2.2 Via Third-Party Sites

Third-party websites, such as InSpot.org, allow patients to notify their partners,

anonymously or not, of a possible exposure to an STD. There are limited outcome

evaluation data available on these third-party notification sites, currently most data are

web usage statistics; however, these sites have potential to improve or increase PS for

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

STDs such as Chlamydia and gonorrhea, which often do not fall with in the purview of

PS. Los Angeles County launched InSpotLA in December 2005. In 2006, the first full

year of regular operation of the website, a total of 9,916 e-cards were sent to 15,984

recipients. Broken out by infection, most of the e-cards sent were about crabs and

scabies, followed by Chlamydia, gonorrhea, and HIV. The great majority of e-cards

(83.7%) were sent anonymously, but nearly as many (80%) also contained a personal

message; 24.5% of e-card recipients clicked through to the inSPOTLA website to receive

more information.

Sites such as InSpot.org make it very easy for people to notify their partners on their

own for STDs for which DIS don’t traditionally get involved. However, for STDs such

as HIV and syphilis, the DIS model is still recommended because there is no way of

verifying that a partner was actually notified, or that the individual sending the

notification even has a laboratory-confirmed STD.

6.4 IPS Patient Follow-Up

It is currently within the purview of each jurisdiction to establish policies on IPS

follow-up. The following are suggested procedures to consider.

• When a partner calls or comes to the clinic, ask how he/she was notified of his/her

potential exposure. If the individual was notified via IPS, the DIS may not have

the real name of the individual. DIS should ask the individual for his/her Internet

screen name or e-mail address, then search the case management data system,

e.g., STD*MIS (Appendix K). Once the DIS confirms the identity of the

individual through other locating information obtained from the original patient,

update the field record. Do not delete the screen name or website from AKA

section.

• Print and attach to the field record all IPS correspondence with the date and time

sent.

• Some individuals may consider seeking services from private medical providers.

When individuals respond with this plan, the DIS should offer to contact the

private medical provider on behalf of the patient. Often, the DIS is able to get an

individual’s case expedited for medical care in the physician’s office. It also

allows the DIS to reiterate the recommended examination, testing, and treatment

protocols with the private medical providers. Health departments will want to be

sure that private medical providers are following recommended STD treatment

guidelines and are properly treating exposed individuals.

6.5 Special Considerations

6.5.1 Instant Messaging

There will be occasions when an investigator has only an individual’s screen name

associated with a specific IM program. If it is not possible to send a private e-mail, the

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

DIS needs to determine if the use of IM is an appropriate mechanism for providing PS

since there are numerous variables that can potentially breech a partner’s confidentiality.

For example, IM conversations can be viewed by website owners and managers as well

as health department IT staff. Or IMs can go straight to a cell phone. Additionally, some

IM programs will sit on a computer desktop whether or not the account user is present.

This means that anyone can see an IM when it pops up on the computer screen and,

therefore, anyone can respond to the IM as well.

7.0 Future of IPS

As new technologies become available and are adopted by the general public, the

field of public health will want to adjust the way in which we conduct business, prevent

the spread of disease, and reach our target populations. There will be many future

technologies that will facilitate sex seeking and currently there are two technologies,

mobile phones and social networking sites (SNS), that health departments and program

areas should begin to think about and consider using for IPS. However, to date, there is

no published evidence or knowledge about how to conduct IPS via these mediums.

7.1 Cell Phones

Much like the Internet, mobile phone use has become commonplace in the US.

Currently, 73% of adults, 77% of young adults, and 63% of teens own cell phones

and

33% of cell owners use the text-messaging features on their phones.

Moreover, cell phones are replacing landline telephones. A report released in April

2007 by the CDC found that about 15.8% of American homes did not have landline

telephones but most of those households had at least one working wireless telephone.

Half of those Americans living in households with only wireless phones are less than 30

years of age. Wireless-only adults are more likely to be living in poverty. They are also

more likely to be men, Hispanic, and living in the South.

It can also be expected that Internet access via mobile devices will become more

prevalent over the next few years. dotMobi is the first Internet domain developed solely

for Internet access through mobile phones. Backed by leading Internet and mobile

organizations, .mobi allows users to bypass the constraints of operators, handsets, and

geography to effectively reach their audience.

In fact, .mobi has recently announced

that 650 city names will be available to city governments in an effort to offer important

city information to citizens and tourists. The city sites will be ideal for sharing news

information, giving business updates, promoting culture and events, and accessing local

attractions, services, and transportation.

Mobile technologies like cell phones are changing the way in which we contact

people, which has relevancy for PN. Currently, we are unaware of any programs or

health departments in the US that are using cell phones specifically for PN; however,

there is one published case out of the UK. In 2001, a letter to the editor in the journal

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

Sexually Transmitted Infections described a clinic patient presenting for STD testing at a

health clinic due to a text message sent to him from his girlfriend. The text message

included the woman’s clinic number and a diagnosis of trichomoniasis. As a result, the

man was able to receive appropriate treatment. This case suggests that mobile phones

and text messaging should be considered for PN.

7.2 Social networking sites (SNS)

SNS have gained widespread popularity in both the US and worldwide. In 2007, the

Pew Internet and American Life Project reported that approximately 55% of teens

between the ages of 12 and 17 use online SNS such as MySpace (www.myspace.com)

and Facebook (www.facebook.com). Forty-eight percent of these teens reported

accessing these sites on a daily basis or more often.

MySpace is by far the most popular

SNS with 85% of the respondents reported having a MySpace profile. And it’s not just

teens; 20% of adults have also created a profile on a SNS site

and the numbers continue

to grow. From 2005 to 2006, MySpace alone saw a 367% year-over-year growth rate in

profiles created.

Needless to say, SNS can be another online venue for sex seeking. Anecdotally, we

know that people are finding sex partners on these sites, and that people testing positive

for STDs are naming partners for which the only information they have is a SNS profile.

However, at the writing of these guidelines, we know of no health department or program

that has actually conducted PN on a SNS, but there are program areas that are starting to

think about the specifics and logistics of conducting IPS on these types of sites.

8.0 Summary

Internet Partner Services (IPS) provides a unique set of tools that can facilitate the

contact of potentially infected individuals. Currently, IPS is most valuable in contacting

individuals that may otherwise be unreachable through screen names, e-mail addresses,

or other Internet aliases. In most jurisdictions, IPS is being used as a supplement to

traditional PN but, as experience grows and as the technology evolves and is employed

by public health, IPS has the potential to become the preferred method of PN.

The need for guidance in regards to IPS has been well established; both the Division

of STD Prevention and the Division of HIV Prevention at the CDC encourage the use of

the Internet for STD/HIV prevention, including IPS.

These guidelines have been created to assist program managers in the development of

their IPS activities or to enhance any existing guidelines. Developed from program

experience and lessons learned by state departments and nonprofit CBOs, these

guidelines provide a foundation to build on and are not prescriptive. It is anticipated that

each jurisdiction will use this guidance as a foundation in the creation of local guidelines

that can address their needs, capabilities, policies, and procedures. Before implementing

IPS, programs must adhere to applicable state/local laws, regulations, and statutes.

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

The content of these guidelines provide guidance on how the Internet can be best used

to contact individuals exposed, or potentially exposed, to an STD/HIV. Current national

STD and HIV program guidelines provide a set of shared principles for the provision of

STD partner services and HIV counseling and referral services. These principles remain

in effect and applicable when using the Internet for PN.

Documentation, program evaluation, process measures, outcome measures, and other

forms of data collection and program review are critical to the long-term success of IPS.

The guidelines address concerns such as confidentiality, ethics, computer security,

staffing, training, and supervision. It is understood that there are significant barriers to

the use of IPS in some jurisdictions that make IPS a unique challenge. Obstacles such as

approved access to Internet sites that are traditionally blocked and the engagement of key

stakeholders exist. With the development of these guidelines it is hoped that these

obstacles will be overcome. In addition to this guidance, consistent and informed

supervision will help to ensure that many of these concerns are addressed.

To ensure that partner notification is effective in its mission to reduce STD and HIV

transmission, public health must employ new technologies as they are adopted by the

general public. These guidelines will help to ensure that your use of the Internet for PN

is as effective and productive as possible.

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

References

1. Centers for Disease Control & Prevention (2008). Guidelines for HIV/STD Partner

Services. Draft version 01-10-2008.

2. Klausner, J.D., Wolf, W., Fischer-Ponce, L., Zolt, I. and Katz, M.H. (2000). Tracing a

Syphilis Outbreak through Cyberspace. JAMA. 284: 447-449.

3. Centers for Disease Control & Prevention. (2003). Internet Use and Early Syphilis

Infection Among Men Who Have Sex with Men --- San Francisco, California, 1999—

2003. MMWR. 52(50): 1229-1232.

4. Centers for Disease Control & Prevention. (2004). Using the Internet for Partner

Notification of Sexually Transmitted Diseases --- Los Angeles County, California, 2003.

MMWR. 53(06): 129-131.

5. Bender, M., Gerard, A., Clothier, W., Wills-Hooks, B. and Goldberg, M. (2002,

March). Using E-mail as an Investigative Tool in Syphilis Case Management. Paper

presented at the National STD Prevention Conference, San Diego, CA.

6. Constant, P. (2004, March). Utilizing the Internet for Partner Notification. Paper

presented at the National STD Prevention Conference, Philadelphia, PA.

7. Gratzer, B., Pohl, D. and Cummins, J. (2007, July). Internet Partner Notification:

Outcomes from a community-based DIS program. Poster session presented at the

International Society for STD Research meeting, Seattle, WA.

8. Mimiaga, M.J., Tetu, A.M., Gortmaker, S., Koenen, K., Fair, A.D., Novak, D.S.,

VanDerwarker, R., Bertrand, T., Adelson, S. and Mayer, K.H. (2008). HIV and STD

status among MSM and attitudes about Internet partner notification for STD exposure.

Sexually Transmitted Diseases. 35(2): 111-116.

9. Centers for Disease Control & Prevention. (2001). Program Operations Guidelines for

STD Prevention. Atlanta, GA. Retrieved June 13, 2007, from

http://www.cdc.gov/std/program/default.htm#guidelines

10. Centers for Disease Control & Prevention. Revised Guidelines for HIV Counseling,

Testing, and Referral. Published November 9, 2001 for MMWR. 50 (No. RR-19): 1-58.

http://www.cdc.gov/mmwr/preview/mmwrhtml/rr5019a1.htm

11. Centers for Disease Control & Prevention. Revised Recommendations for HIV

Testing of Adults, Adolescents, and Pregnant Women in Health-Care Settings. Published

September 22, 2006 for MMWR. 55 (No. RR-14): 1-17.

http://www.cdc.gov/mmwr/preview/mmwrhtml/rr5514a1.htm?s_cid=rr5514a1_e

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

12. McFarlane, M., Bull, S.S. and Rietmeijer, C.A. (2000). The Internet as a newly

emerging risk environment for sexually transmitted diseases. JAMA. 284(4): 443-446.

13. McFarlane, M., Bull, S.S. and Rietmeijer, C.A. (2002). Young adults on the Internet:

Risk behaviors for sexually transmitted diseases and HIV. Journal of Adolescent Health.

31 (1): 11-16.

14. McFarlane, M., Kachur, R., Bull, S. and Rietmeijer, C. (2004). Women, the Internet,

and sexually transmitted infections. Journal of Women’s Health. 13 (6): 689-694.

15. Klausner, J.D., Levine, D. and Kent, C. (2004). Internet-based site-specific

interventions for syphilis prevention among gay and bisexual men. AIDS Care.16 (8):

964-970.

16. Gilliam, J., Augustine, J. and Penn, A. (2003). Web-based interventions for youth at

risk for HIV/STDs. Presented at the STD/HIV Prevention and the Internet conference.

Washington, DC.

17. Levine, D.K., Scott, K.C. and Klausner, J.D. (2005). Online syphilis testing –

confidential and convenient. Sexually Transmitted Diseases. 32 (2): 139-141.

18. Madden, M. (2006, April). Internet Penetration and Impact. Pew Internet & American

Life Project. http://www.pewinternet.org/PPF/r/182/report-_display.asp

19. Douglas, J. and Janssen, R. (2005). Dear Colleague Letter – the Internet, risk

behaviors and potential interventions. Centers for Disease Control & Prevention,

September 13, 2005. http://www.cdc.gov/std/DearColleague9-13-2005.pdf

20. Centers for Disease Control & Prevention. HIPAA Privacy Rule and Public Health.

Atlanta, GA. Published April 11, 2003 for MMWR. 52: 1-12.

http://www.cdc.gov/mmwr/preview/mmwrhtml/m2e411a1.htm

21. Salabarria-Pena, Y., Apt, B.S. and Walsh, C.M. (2007). Practical use of program

evaluation among sexually transmitted disease (STD) programs, Centers for Disease

Control and Prevention, May 17, 2007. http://www.cdc.gov/std/Program/pupestd.htm

22. Rotblatt, H., Plant, A., Levine, D., Engeran, W.J. and Kerndt, P.R. (2007, July). The

First Year of inSPOTLA: Report from the Field on Internet HIV/STD Partner

Notification. Poster session presented at the International Society for STD Research

meeting, Seattle, WA.

23. Raines, L. (2007, February). The new digital ecology: The growth and impact of the

Internet (and related technologies). Presented at the Washington Web Managers

Roundtable, Washington, DC. http://www.pewinternet.org/ppt/2007%20-%202.1.07%20-

%20Webmanagers%20Roundtable%20-%20final.ppt

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

24. Rainie, L. and Keeter, S. (2006, April). How Americans use their cell phones. Pew

Internet & American Life Project.

http://www.pewinternet.org/PPF/r/182/report_display.asp

25. Blumberg, S.J. and Luke, J.V. (2007, May). Wireless substitution: Early release of

estimates based on data from the Nation Health Interview Survey, July – December 2006.

National Center for Health Statistics. http://www.cdc.gov/nchs/nhis.htm

26. dotMobi. (2006). .mobi fact sheet. Retrieved 9/21/2007 from

http://www.mydotmobi.com/about_whatisdotmobi.htm

27. dotMobi. (July 9, 2007). Dotmobi offers “city.mobi” names. Retrieved 7-9-2007 from

http://pc.mtld.mobi/node/679

28. Newell, A. (2001). A mobile phone text message and Trichomonas vaginalis.

Sexually Transmitted Infections. 77: 225.

29. Neilson/Net Rating. (2006, May). Social networking sites grow 47 percent, year over

year, reaching 45 percent of web users. http://www.nielsen-

netratings.com/pr/pr_060511.pdf

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

Glossary of Acronyms

AKA Also known as

CBOs community based organizations

CDC Centers for Disease Control & Prevention

DSL digital subscriber line

DIS Disease Intervention Specialist

EDG Employee Development Guide

FAQ/A Frequently Asked Questions/Answers

GLI Group Level Interventions

HC health communications

HERR Guidelines CDC Guidelines for Health Education & Risk Reduction Activities

HIPAA Health Insurance Portability and Accountability Act

IM Instant Message or Instant Messaging

IO Internet Outreach

I&R Information and Referral

IT Information Technology

ILI Individual Level Interventions

IOP Internet Outreach Programs

IPN Internet Partner Notification

IPS Internet Partner Services

ISP Internet Service Providers

ISIS Internet Sexuality Information Services

LGV Lymphogranuloma venereum (an STD)

MSM Men who have sex with men

MMWR Morbidity & Mortality Weekly Report (CDC)

MRSA Methicillin-resistant Staphylococcus aureus infection

NCI National Cancer Institute

NGOs Non-governmental organizations

NCSD National Coalition of STD Directors

OP original patient

OOJ out of jurisdiction

PN Partner Notification

POG Program Operating Guide

PCRS Partner counseling and referral services

PS Partner Services

SNS social networking sites

STD*MIS STD Data Management Information System

For a more comprehensive list of acronyms used on the Internet please click:

http://www.gaarde.org/acronyms/

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

APPENDIX A

Examples of Confidentiality Agreements

Example #1 – Howard Brown Health Center

PLEDGE OF CONFIDENTIALITY

It is the goal of Howard Brown Health Center (HBHC) to provide our clients (anyone

seeking care or services with or through HBHC) with professional, competent and quality

care and education in a respectful, affirming atmosphere. As an employee, consultant,

auditor or volunteer of HBHC, you have a responsibility to maintain a sense of concern

and professionalism while performing your duties. In the execution of this duty, you

must be sensitive to the comfort, sensitivities and confidentiality of the client.

The comfort and confidentiality of our clients is of primary concern to HBHC. The

professionalism of our staff is necessary to maintain the comfort and trust we have built

through the years. Courts and health care professionals maintain that upholding patient

confidentiality is an absolute necessity. Federal Courts guarantee absolute privacy

regarding all STD medical records. Furthermore, sexual health histories may not be

subpoenaed by any court. Breaches of confidentiality regarding the aforementioned data

may be punished by dismissal. As an employee, consultant, auditor or volunteer of the

HBHC, it is imperative that you follow all Federal, state and local confidentiality laws.

In addition to the legal confidentiality laws, as an employee, consultant, auditor or

volunteer of HBHC, you must also abide by the following:

• Some of us, in the context of our duties, advise, within the clinical setting, appropriate

and inappropriate behavior as it pertains to physical and/or mental wellness. In the

context of this document, clinical setting includes all areas and/or physical space in

which you perform your assigned duties.

• We do not, and can not, be “moral custodians”, nor do we have policing rights.

• Do not discuss clients or client data with unauthorized persons.

• Discuss clients or client data only to conduct legitimate business, and such

discussions should take place only in a manner(s) and location(s), which affords

absolute privacy.

• Do not discuss clients or patients outside of HBHC for any reason.

• Make no reference to a client visit to HBHC should you meet a client elsewhere.

• Preserve the confidentiality of friends who are HBHC clients as you would any

HBHC client.

• Never acknowledge the presence or absence of clients to any caller.

• Respect for clients is mandatory as a representative of HBHC.

• Client confidentiality is respected and maintained by all staff and other members of

the Howard Brown Health Center’s workforce after concluding their working

relationship with Howard Brown Health Center.

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

BREACH(ES) OF CONFIDENTIALITY WILL NOT BE TOLERATED AND IS

GROUNDS FOR IMMEDIATE DISSMISSAL.

We guarantee our clients absolute confidentiality of their records. Any client requesting

a copy of their records must follow the HBHC Policy of Chart Access. No person shall

be permitted to view client medical, mental health, or case management records, unless

written documentation of permission by the client involved is provided.

Your signature below confirms that you have read, understand and accept to follow the

Howard Brown Health Center’s Pledge of Confidentiality.

Signature: ___________________________________________

Name: ______________________________________________

Date: ________________

Example #2 – San Francisco Department of Health

CONFIDENTIALITY AGREEMENT

USE OF DPH RECORDS AND INFORMATION SYSTEMS

Individuals with access to the records and information systems (Internet, e-mail, telephone, pager, fax

machines, etc.) of the San Francisco Department of Public Health have a legal and an ethical responsibility

to protect the confidentiality of medical, financial, and personnel information, and to use that information

and those systems only in the performance of their jobs. The following rules apply to information that you

receive or send from any source, including computer, paper, telephone, and facsimile.

Confidential information may not be accessed, discussed, or divulged in any form except as required in the

performance of your duties. Sharing confidential medical information is allowed within DPH among

medical professionals in order to provide medical care to a patient.

You may not use any DPH information system for any type of personal use. Use the following test: “Is my

use of this information system enabling me to provide better service, or to perform my duties more

effectively or less expensively?” If the answer is no, then your use of the information or system is

unnecessary and/or inappropriate.

Be aware that most DPH information systems maintain records of what is viewed and/or sent by whom.

You may be asked to justify why you viewed or released specific information.

You may be given a user ID and a password to enable you to view computerized information. Under no

circumstances may you disclose your User ID or password other than to your supervisor or to IS staff. If

you suspect someone else has knowledge of your password, you must immediately notify your supervisor

and the divisional IS Manager.

The hardware, software, and data used in the DPH information systems are the property of DPH. All

software installed on a DPH computer must be authorized in writing by IS and must be licensed to allow

installation on a DPH computer. DPH has the right to review and remove personal or unlicensed software

and data on any DPH computer.

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

If you, inadvertently or intentionally, misuse or improperly disclose your user ID or password, misuse or

improperly disclose confidential information, use DPH information systems for personal reasons, or install

personal or unlicensed software or data on a DPH computer, you may lose access to the computer system,

be subject to disciplinary action up to and including termination, be reported to the appropriate licensing

board, and/or be subject to civil or criminal liability.

**************************************************************************************

****************************************************

I understand that I have no privacy right in the information in my DPH computer or the information that I

access or send via my computer or other DPH equipment. I acknowledge that my use of DPH information

systems and equipment may be monitored.

___________________________________ ___________________________________

PRINT NAME DIVISION

_____________________________ ___________________________________

SIGNATURE SSN

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

Appendix B

Example of a Legal Disclaimer

***Notice***

This email and any files transmitted with it are confidential and intended solely for the

use of the individual or entity to which they are addressed. If you have received this e-

mail in error please notify the sender. This message contains confidential information

and is intended only for the individual named. If you are not the named addressee you

should not disseminate, distribute or copy this e-mail.

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

Appendix C

Protocol for the use of a stand-alone computer with DSL line

Reasons for a specifically dedicated computer:

Research has shown that people are not only using the Internet for seeking sex

partners but that these online behaviors are often antecedents to very risky offline sex

behaviors, including increases in anal sex and a decrease in condom use. Activities such

as online outreach, partner notification, and health communications are additional public

health tools for STD/HIV prevention and education.

Approved activities:

 Access to sexually explicit websites and content on the Internet

 Access to chat rooms

 Access to social networking sites

 Use of instant messaging programs

 Use of web-based e-mail programs

Unacceptable activities:

 Gambling

 Dating

 Downloading non-work-related music or videos

 Illegal activities

Computer access:

 Researchers whose work specifically relates to the Internet (or other

technologies) and STD/HIV prevention may use the dedicated computer

 The computer will be password protected

 All researchers with access to the computer will have to sign a form agreeing to

use the computer only for the approved activities

 The computer will be maintained on a unique server that has no connection to

the main server

 The computer will have virus protection that will be regularly updated.

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

APPENDIX D

Logic Models

Logic Model Template

Inputs Activities Outputs

-------- Outcomes ------

Short Intermediate Long

Goal/Situation:

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

Logic Model for State X Comprehensive STD Prevention Systems (CSPS) Program

INPUTS

Funds

CDC/ DSTDP

-Other federal

sources

-State sources

-Private sources

Assigned Staff

-SHD/LHD

CDC guidelines

and

recommend-

dations

Technical

assistance and

collaboration

-Federal

agencies

-State agencies

-Local agencies

-NGOs &

affiliates

ACTIVITIES

-Provide

community and

individual

behavior change

interventions on

syphilis.

-Provide medical

and laboratory

services.

-Provide

Chlamydia

screening among

sexually active

female

adolescents and

young women.

-Ensure syphilis

partner services.

-Promote

leadership and

program

management.

-Conduct

surveillance and

data management.

-Provide or ensure

training and

professional

development.

-Ensure a

documented STD

outbreak response

plan.

OUTPUTS

Community/ Individual Behavior

Change Interventions

-Community and behavioral

interventions on syphilis

implemented among at-risk MSM.

Medical and Lab Services

-Lab/medical facilities and

providers reporting testing results.

-Female admittees in juvenile

detention facilities screened for

Chlamydia.

Partner Services

-Syphilis cases’ partners identified.

Leadership and Program

Management

-Strategic plan in place.

-Program operation plan to monitor

program activities.

-Appropriate program policies on

professional development in place.

Surveillance and Data

Management

-Reported cases of P&S syphilis and

Chlamydia sent to CDC within 30 to

60 days from the date of specimen

collection.

Training and Professional

Development

-Staff training needs regularly

assessed.

-Training opportunities on syphilis

and Chlamydia provided and

individuals trained.

STD Outbreak Response

Planning

-Plan includes required elements.

SHORT-

TERM

OUTCOMES

~ 1 to 3 years

Increased

knowledge:

-Consequences

-Safe behaviors

-Self assessment

of risk

Increased

intention to use

condoms

INTERMEDIATE

OUTCOMES

~ 3-5 years

Increased safer sex

behaviors:

-Abstinence

-Mutual monogamy

-Fewer concurrent

partners

LONG-TERM

OUTCOMES

~ 5 or more years

-Reduced Syphilis

incidence

- Reduced

Chlamydia

prevalence

SalabarríaPeña, Y., Apt, B.S. and Walsh, C.M. (2007). Practical Use of Program

Evaluation among Sexually Transmitted Disease (STD) Programs. Centers for

Disease Control and Prevention.

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

APPENDIX E

Example of Documentation Log

INTERNET PARTNER NOTIFICATION LOG SHEET

Your Name: DIS # & State:

Initiation Date: OP Id # and Disease:

Partner

E-Mail

Date

Website

Name

Partner’s

E-Mail

E-

Mail

Script

Logon

Time

Logon

Time

Notes/Outcome

of Activity

Disease

Verification

E-mail)

Closure

Code

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

APPENDIX F

Check list for creating guidelines for online/Internet partner notification

Determine who will need to be involved with the creation of the guidelines

___ Health Department Medical Director/Administrator

___ Health Department Security Coordinator

___ Health Department Information Technology (IT) Director

___ Legal Department

___ Management Information Systems (MIS) Director

___ STD Epidemiologist

___ STD Area Managers

___ STD Program Managers

___ HIV Program Managers

___ STD Disease Intervention Specialist (DIS) representative

___ External Partners (community-based organizations [CBOs] working with affected

communities, Website owners, etc.)

Determine who will be covered by the guidelines

___ A specific department (e.g., STD/HIV program)

___ A city or county health department

___ The entire state department of health

Determine technological and staffing needs

___ Do you need to hire someone new or are there existing staff members who can

work on Internet/online projects such as partner notification online?

___ How much of this staff member’s time will be dedicated to online projects – 5

– 100%?

___ Should this staff member come to the position with the necessary knowledge

or can they be trained on the job?

___ Is there someone who has the time to supervise this staff member?

___ Is there at least one computer that can be dedicated to this purpose?

___ Creation of a dedicated e-mail account?

___ Approval obtained for unrestricted access to the Internet?

___ At least one IT contact working with staff member?

Sections of guidelines

___ Introduction/Purpose

___ Involved personnel

___ Description of responsibilities of all involved personnel

___ Competencies required of personnel conducting online partner notification

___ Training

___ Confidentiality

___ Standard Operating Procedures of conducting online partner notification

including templates and examples

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

___ Adverse Events or Emergencies

___ Documents and Documentation

___ Evaluation

Details within each Guideline section

Introduction/Purpose

___ Statement of purpose, i.e., who, what, when, where, why

___ Description of chat rooms, instant messaging, listservs, websites, etc., as well

as passive vs. active outreach

Personnel intimately involved with the online partner notification

___ Primary employee conducting online partner notification

___ Secondary employee to cover if primary employee is out of the office

___ Supervisor

___ IT employee for guidance and technical support

Description of responsibilities of all involved personnel

Competencies required of personnel conducting online partner notification

___ Demonstration of good judgment and performance of responsibilities related

to partner notification

___ Cultural Competency

Training (some examples/suggestions)

___ Introduction to STD Intervention (ISTDI)

___ Information Security Training

___ Internet Partner Notification and Referral Services Training

Confidentiality

___ Description of how confidentiality will be handled and maintained

___ Description of how a patient’s identity will be confirmed

___ Confidentiality agreement signed by all involved parties including IT and

front-desk staff

Standard Operating Procedures of conducting online partner notification including

templates and examples

___ Creation of step-by-step procedures on how to conduct online partner

notification

___ Creation of documentation forms and logs

___ Creation of e-mail language, number of attempts made in a certain time frame,

etc.

___ Creation of referral resources

___ Templates of e-mails, forms, logs, etc.

Adverse Events or Emergencies

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

___ Description of how adverse events or emergencies will be handled

___ Who will handle adverse events or emergencies?

Documents and Documentation

___ List of all documents to be used including copies

___ Where documents will be stored

___ When and who will review documents

___ Documents should include, at minimum, the following:

___ original patient case number

___ e-mail or screen name of partner

___ website where partner was met, if possible

___ real name of partner if obtained

___ disposition of the case

___ dates & times e-mails were sent

___ responses received

___ turn-around time or time frame for completion

Evaluation

___ Process Evaluation (ongoing evaluation while program is being developed

and implemented)

___ During development and implementation, meet on a regular basis with

the team involved and ask the following questions:

Í What is working?

Í What should be improved?

Í How should it be changed?

___ Outcome Evaluation (assessing the degree to which the program has met the

objectives, or the degree to which the program has been of use to the target

population)

___ Outcome evaluation should be conducted yearly to gauge the impact of

the program. Ask the following questions:

Í What has happened?

Í Who was affected?

Í What was the most effective aspect of the program?

Í Was it cost-effective?

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

Appendix G

Examples of Screen Names and Profiles

Organization Screen/Profile Name Email address

San Francisco City Clinic

SFCityClinic [email protected]

Massachusetts Dept. of Health,

STD Division

DivofSTDMA Varies

Howard Brown

HBHCinChicago [email protected]

Washington, DC STD Control

Program

dcSTD [email protected]

Required Manhunt Logos for Health-Related Profiles

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

Example 1: Massachusetts Department of Health, Division of STD Prevention

Partner Notification Profile

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

Example 2: Washington, DC STD Control Program

Partner Notification Profile

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

Example 3: Legacy Community Health (Houston, Texas)

Outreach Profile

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

APPENDIX H

Sample e-mails - Traditional language

Day 1 of Investigation

E-mail - 1st attempt

To: [email protected]

From: [email protected]

Subject: URGENT HEALTH MATTER

My name is John Investigator, and I am with NCSD. I have urgent and confidential health

information to discuss with you. I can be reached at my office at (555) 234-5678. Please contact

me as soon as possible. Thank you, John Investigator.

Day 3 of Investigation

E-mail - 2nd attempt

To: [email protected]

From: [email protected]

Subject: HEALTH DEPARTMENT MATTER

My name is John Investigator and I work with NCSD. I attempted to contact you on 01/01/04; I

have some very important health information to share with you. This is a very urgent matter, and

because of the confidential nature of this information, it is vital you contact me. Please call me at

(555) 234-5678. I can be reached at this number from 8am to 5pm, Monday through Friday or

you can contact me using my e-mail address St[email protected] or my cell phone at (555) 255-

5888. To assist you in confirming my identity, I have included my supervisor’s name and phone

number: Josefina Boss, Program Manager, (555) 234-5679. Please do not delay in contacting

me.

John Investigator

Disease Intervention Specialist

NCSD

South Central District Office (555) 234-5678

If no response after Day 4, the DIS should discuss the situation with their supervisor. Attempt to

re-interview the original patient for additional locating information, and/or consider having the

original patient attempt to notify the partner. The original patient can explain that a

representative from the health department will be contacting him/her with important health-

related information, plus provide the DIS name and office number.

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

Appendix I

Sample e-mails - Alternative language

E-MAIL 1

Day 1 of investigation

Dear <<screenname>>,

My name is John Doe, and I am from the Washington DC Department of Health, STD Control

Program. I’m emailing you because someone you met online was recently diagnosed with a

laboratory-confirmed sexually transmitted disease (STD).

You need immediate medical attention because this person identified you as a sexual partner

during the infectious period of this STD. For confidentiality reasons, I cannot tell you anything

about the person you had sex with, including when it occurred.

Please call me at 202.XXX.XXXX, and I can tell you more about the specific infection and

where you can go to be tested and treated for free.

If I’m not there when you call, I will call you back. Be sure to leave a number and time when I

can reach you. My voicemail is private, confidential, and password-protected.

I check my voicemail and email at the beginning and end of each business day (8am-4:30pm, M-

F).

If you want to check that this email is real, call the Division of STD Prevention at 555-555-5555

and ask to speak with our Medical Epidemiologist, Dr. J. Doe. You can also <<call Website/ISP

Administration at XXX.XXX.XXXX>> to confirm the legitimacy of this <<Website/ISP]

account.>>

Thank you,

John Doe, [credentials]

Disease Intervention Specialist (or other title)

STD Control Program, Washington, DC Department of Health

Email: [email protected]

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

E-MAIL 2

Day 6 of Investigation

Dear <<screenname>>,

I noticed that you read my first email, but I didn’t hear back from you.*

I have important information about the specific STD you have been exposed to and want to give

you a couple of ways to get this important information:

1. You can call me at 202.XXX.XXXX and I can tell you more. My voicemail is private,

confidential, and password-protected.

2. You can email me (at this email or at [email protected]

), and let me know that it’s okay to give

you more details about this STD in writing. Just put “I agree” in the subject line.

Remember, I check my voicemail and email at the beginning and end of each business day (8am-

4:30pm, M-F).

**[If you want to check that this email is real, call the Division of STD Prevention at 555-555-

5555 and ask to speak with our Medical Epidemiologist, Dr. J. Doe. In addition, you can email

me at my work address: [email protected]

. You can also <<call Website/ISP Administration at

XXX.XXX.XXXX>> to confirm the legitimacy of this <<Website/ISP>> account.]**

Thank you,

John Doe, [credentials]

Disease Intervention Specialist (or other title)

STD Control Program, Washington, DC Department of Health

*If it is not known if the individual read the email (i.e. Adam4Adam), the first line will need to

be modified: “A few days ago I sent you an email, and I didn’t hear back from you.”*

**If it can be confirmed that the partner has not deleted the first email (which has verification

information), then the verification information should not be included in Email 2.**

National Guidelines for Internet-based STD/HIV Prevention_Outreach_Draft_02-11-2008_for review.doc

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

E-MAIL 3

Day 11 of Investigation

Dear <<screenname>>,

As you know, I’ve tried to reach you twice now about your exposure to a laboratory-confirmed

STD. Although I respect that you don’t want to contact me to find out which specific infection

you may have been exposed to, my hope is that you have visited your medical provider and let

them know I’ve been in contact with you.

Remember, with many STDs, you need to be treated for your exposure, regardless of your STD

test result.

This will be my last unsolicited email to you regarding this specific exposure. However, in the

future if you are exposed to another laboratory-confirmed STD, I may be contacting you again.

Finally, if you decide to call me (202-XXX-XXXX) or email me ([email protected]), I want to

emphasize that our communication is strictly confidential.

Thank you,

John Doe, [credentials]

Disease Intervention Specialist (or other title)

STD Control Program, Washington, DC Department of Health

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

Appendix J

Description of Washington DC’s timeframe for sending IPS e-mails

A series of emails has been created to initiate Internet Partner Notification (IPS) in a

standardized manner. The IPS DIS will commence by sending E-mail 1. If there is no response,

E-mail 2 shall be sent after five days; likewise, E-mail 3 shall be sent five days later. Only three

unsolicited e-mails shall be sent per disease exposure. If the partner expresses interest in no

further communication, E-mail “Negative Response” shall be sent. If a partner expresses interest

in learning more via e-mail, E-mail “Positive Response” shall be sent. If the interested partner

has not responded within one week after E-mail “Positive Response” being sent, E-mail

“Positive Response Follow-up” shall be sent. In many situations, partners may attempt to call

the IPS DIS, at which point the IPS DIS shall refer to previous training to handle telephone

communication.

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

APPENDIX K

Documenting IPS in STD*MIS

Example - Massachusetts

Documentation Requirements

• The DIS will document all Internet activity.

• DIS must document all work with the date, time and description of each interaction on the

Internet PN Log Sheet.

• All e-mail documentation should be kept in a case file.

• Internet PN must be entered and kept up-to-date in STD*MIS (see below).

Entering Internet Screen names into STD*MIS

This section of the policy seeks to address sexual contacts of infected individuals who are

known to the infected patient by their screen names or e-mail addresses only. This flexible

approach is based on how much information is available about a partner and serves as a

systematic way to maintain accurate records of not just names, addresses and phone numbers, but

also screen names. In this way, we can perform searches for individuals by their screen names

and/or e-mail addresses when no other information is available.

• Individuals who are only known by their screen name are entered into STD*MIS as: Internet,

screen name (For example, Internet, Sexyperson.) Both the first and last names should be

updated when more information becomes available.

• Screen names are entered into the Also Known As (AKA) section. AKAs should never be

changed or deleted. New screen names must be added as needed. (It is important to note that

individuals can be searched for in STD*MIS by their AKA only- no other information about

first or last names is needed to perform a search.) If the individual is not currently in the

STD*MIS system, we can add them and open a new Field Record.

• Screen names pertain to specific Internet sites. These sites (Manhunt, AIM, Yahoo, etc.)

must be noted in the Notes section of the Field Record. Individuals may change their screen

names frequently, so it is essential that the date of the last known use of the screen name be

noted in the Notes section. (For example: MH “Sexyperson” 4/19/06, Yahoo “SexyP”

4/19/05, AIM “SexyPER” 4/19/04.)

• The way we currently manage missing locating information remains the same. For example,

if we know a client’s first name and address, this individual is entered into the system as

“John UNK.” Now, with this new system for entering names into STD*MIS, sexual contacts

will be entered into the system as “Internet, screen name,” or, if we know the client’s first

name, “John Internet.”

• Case dispositions should be entered into STD*MIS with the following codes (STD*MIS does

not allow numbers to be entered after letter codes; this can be noted in the case file):

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

Code Description

A* Preventative treatment (not infected - confirmation of examination and/or

treatment)

C* Infected, brought to treatment (infected - confirmation of examination and/or

treatment)

L1** Patient states examination and/or treatment (not infected - no provider

confirmation)

L2** Patient states examination and/or treatment (infected - no provider confirmation)

J** Informed of disease exposure - no further contact with MPDH (located, received

specific STD exposure info, no further contact with MDPH)

H1 E-mails read but never responded (located but refused to respond, did not receive

specific STD disease information)

H E-mail(s) not read (unable to locate)

* Infers direct contact with DIS

** Infers e-mail or phone communication without disclosure of identifying information

Example – Washington DC

Within 72 hours of the Original Interview, the investigating (Ix) DIS will record in the OP’s

STD*MIS file that the OP had a “PARTNERS INTERNET” risk factor. Internet partners are

recorded as contacts of the OP; if a partner is not listed in STD*MIS (after a search using the

FIRST NAME, LAST NAME, and AKA fields), a patient record is created for him/her. The Ix

DIS should then complete a Field Record for the partner with all information pertaining to the

Internet partner (including physical descriptions, identical spelling of e-mail addresses, sex

venues, etc.). The Ix DIS will then assign this partner to the IPS Coordinator (writing the IPS

Coordinator’s Worker Number STD*MIS number in the Field Record).

For data entry, Ix DIS should follow this format:

Individuals who are only known by their screen name (internal e-mails) or e-mail address

(external e-mails) are entered into STD*MIS as FIRST NAME:

“<<SCREENNAME@WEBSITE or e-mail address>>”, LAST NAME: “INTERNET”. Both the

first and last names should be updated when more information becomes available. The screen

names will be entered followed by the website. Note: For long screen names or e-mail

addresses, simply enter as much of the name that will fit into the space (20 characters).

Examples for Internal Emails:

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

Website Screenname STD*MIS Entry

Manhunt.net SWEATYnDC [email protected]

Adam4Adam.com SWEATYnDC [email protected]

Manhunt.net HOTnSWEATYnDC HOTNSWE[email protected]

Adam4Adam.com HOTnSWEATYnDC HOTNSWEATYNDC

@ADAM4ADAM.COM

Examples for External Emails:

Website Screenname STD*MIS Entry

Gay.com SWEATYnDC [email protected]

Yahoo.com SWEATYnDC SW[email protected]

Gay.com HOTnSWEATYnDC HOTNSWE[email protected]

Yahoo.com HOTnSWEATYnDC HOTNSWEATYNDC@YAHOO.COM

In addition, screen names and e-mail addresses are entered into the AKA section. AKAs

should never be changed or deleted. New screen names must be added to the AKA section as

needed. (It is important to note that individuals can be searched for in STD*MIS by their AKA

only—no other information about first or last names is needed to perform a search.) If the name

of the Internet partner becomes known at a later date, it is important that the screen name is

moved to the AKA section because it will allow for the individual to be searched in the future

under his/her screen name.

Individuals may change their screen names frequently, so it is essential that the date of the

last known use of the screen name be noted in the Notes section (e.g.,

“SWEATYnDC@MANHUNT 4/19/06”).

The way we currently manage missing locating information remains the same. For example,

if we know a client’s first name and address, this individual is entered into the system as “JOHN

UNK.” Now, with this new system for entering names into STD*MIS, sexual contacts will be

entered into the system as “<<SCREENNAME@WEBSITE>> INTERNET” (or “<<EMAIL

ADDRESS>> INTERNET”) or, if we know the client’s first name, “<<FIRST NAME>>

INTERNET.”

For data entry, IPS DIS should follow this format:

Within the Field Record, under “EVENTS”, the IPS DIS shall choose the last option:

“INTERNET PARTNER NOTIFICATION”. In the “INTERNET PARTNER

NOTIFICATION” screen, there are a series of Y/N fields. The first field, “IPS”, indicates

whether the individual is an Internet partner. The remaining 13 fields, “IPS_L1a through

IPS_L4” allow for further explication of the “L” disposition that is designated for an Internet

partner (see Dispositions below).

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

Case dispositions should be entered into STD*MIS with the following codes (STD*MIS does

not allow numbers to be entered after letter codes; this can be noted in the case file):

Code Description

A Preventative treatment

B Refused preventive treatment

C Infected, brought to treatment

D Infected, not treated

E Previously treated for this infection

F Not infected

G Insufficient information to begin investigation

H Unable to locate

J Located, refused examination

K Out of Jurisdiction

L Other*

L1 Informed of specific STD exposure (2nd e-mail, phone call, in-person

communication)

a. Informed of specific STD exposure, claims preventive treatment

b. Informed of specific STD exposure, refuses preventive treatment

c. Informed of specific STD exposure, claims to be infected and treated

d. Informed of specific STD exposure, claims to be infected and not treated

e. Informed of specific STD exposure, claims to be previously treated

f. Informed of specific STD exposure, claims to not be infected

g. Informed of specific STD exposure, no further contact

L2 Informed of an STD exposure (first e-mail)

L3 Not informed of STD exposure

Refused—E-mails not read even though patient logs in

Refused—Patient blocks IPS screen name

Not known if e-mails are read

Unable to locate (Patient has not logged in during Field Investigation period.)

L4 Insufficient information to begin investigation (Screen name does not exist.)

*The L disposition will be used for Internet disposition codes, provided the Internet

partner does not have any physical locating information (i.e., name and/or address). If

physical locating information is acquired at any point throughout IPS, traditional

disposition codes (A-K) shall be used.

National Guidelines for Internet-based STD/HIV Prevention – Partner Services – March 2008.doc

Data Entry into the Proposed STD*PAM

In the proposed STD*PAM software, data entry will follow the same format. However, an

additional, “Internet Partner” Disposition Code (e.g., “WI”) will be added to differentiate

Internet partner dispositions from traditional partner dispositions:

Code Description

A Preventative treatment

B Refused preventive treatment

C Infected, brought to treatment

D Infected, not treated

E Previously treated for this infection

F Not infected

G Insufficient information to begin investigation

H Unable to locate

J Located, refused examination

K Out of Jurisdiction

L Other

W Marginal Partner Dispositions

WI Internet Partner Disposition

WI1 Informed of specific STD exposure

WI2 Informed of STD exposure

WI3 Not informed of STD exposure

WI4 Insufficient information to begin investigation

In addition, another question will be added to the field record to indicate the type of Provider

(DIS) Referral. The choices will be:

Telephone

In-person

E-mail

E-card

National Guidelines for Internet-based STD/HIV Prevention – Outreach – March 2008.doc

Guidelines for Internet Outreach

ational Guidelines for Internet-based STD/HIV Prevention - Outreach – March 2008.doc

Table of Contents

Page

1. Introduction

2. Background

3. Principles of Outreach 5

3.1. Cultural and Linguistic Competency

3.2. Client Centered

3.3. Confidentiality and Privacy 7

3.4. Ethics and Safety 8

3.5. Approaching Your Audience 9

4. Getting Started 11

4.1. Community Assessment 11

4.2. Choosing a Population to Target 12

4.3. Working In Online Venues 13

4.4. Accessing Adult Sites 14

4.5. Website Terms of Service 15

5. Program Implementation 15

5.1. Recommended Internet Outreach Program Core Elements 15

5.2. Frequently Asked Questions and Answers (FAQ/A) 16

5.3. Referral To Resources 16

5.3.1. Recommended Types of Resources 16

5.4. Recruitment Into Other Prevention Programs 17

5.5. Follow Up 17

5.6. Evaluation of Internet Outreach Program and Activities 17

5.7. Staffing 19

5.7.1. Effective Internet Outreach Staff

5.7.2. Use of Volunteer Peer Educators 19

5.7.3. Internet Etiquette

5.8. Training

5.8.1. Suggested Training Topics 21

5.9. Online Screen Names and Profiles 22

5.9.1. Essential Elements

5.9.2. Inappropriate Elements 23

5.10. Features in Online Venues

5.10.1. Chat Rooms 24

5.10.2. Instant Messaging 24

5.10.3. E-mail

5.10.4. Bulletin/Message Boards and Forums 26

5.10.5. Social and Sexual Networking Sites

6. Limitations of Internet Outreach 27

ational Guidelines for Internet-based STD/HIV Prevention - Outreach – March 2008.doc

7. Summary

References

Glossary

Appendices

Appendix A Examples of Confidentiality Agreements 37

Example 1. Howard Brown Health Center

Example 2. San Francisco

Appendix B Sample Chat 40

Appendix C Examples of Screen Names and Profiles 41

Example 1. San Francisco, CA

Example 2. Houston, TX

Appendix D Checklist of creating guidelines for Internet-based outreach 43

Appendix E Suggested Rules or Code of Conduct for

Online Outreach Workers 46

Appendix F Logic Models 47

Template

Example

Appendix G Sample Chat Room Activity Report Form 49

Appendix H Sample Instant Messaging Activity Report Form 50

Appendix I Sample Instant Message Log 51

Appendix J Sample E-mail Activity Report Form

Appendix K Example of Frequently Asked Questions (FAQ)

Appendix L Chat Acronyms/Abbreviations and Meanings

ational Guidelines for Internet-based STD/HIV Prevention - Outreach – March 2008.doc

1. Introduction

This section of the Internet Guidelines makes recommendations for conducting

STD/HIV prevention outreach and recruitment activities on the Internet and through

virtual settings, such as chat rooms, social networks, bulletin boards, e-mail groups, and

other online communities. For the purposes of this document, outreach is defined as a

virtual interaction between an STD/HIV prevention professional, such as an outreach

worker, and a person or persons at risk for STDs or HIV for the purposes of providing

STD/HIV related: health information and education, referrals and access to services,

recruitment for testing and treatment, and support for reducing risk behaviors.

In the field of HIV and STD prevention, outreach has been an important method for

information and service delivery, particularly among those populations that do not access

the traditional health care system or are considered hard-to-reach.

1-3

Outreach activities meet the clients where they are (both physically and behaviorally),

helps to create a credible and trusting relationship between program staff and clients, and

allows for health and risk assessments. These activities provide accurate and relevant

health information, referrals to services, and testing and treatment, which ideally results

in behavioral change. Similarly, Internet-based or online outreach meets at-risk

populations where they are, in this case virtually, and is an additional means of providing

health information, risk reduction materials and messages, and referrals to services,

thereby promoting and supporting positive behavioral changes.

Few studies have been conducted specifically on the impact or effectiveness of either

street or online outreach. Programs should consider the following when determining

whether or not to conduct online outreach: cost effectiveness, feasibility, acceptability,

and replicability.

4-5

Despite this, certain basic programmatic and staff requirements are

necessary, as determined by those with the most experience conducting online outreach.

The following recommendations should be used in conjunction with the CDC’s HIV

Health Education and Risk Reduction Guidelines

(HERR); CDC’s Program Operations

Guidelines for STD Prevention

; and CDC’s HIV Counseling, Testing, and Referral

guidelines

15-16

These guidelines have been developed for agencies and/or programs that intend to

implement Internet outreach or to enhance existing guidelines in departments where

guidance is in place. Some agencies/programs may have more in-depth guidance or

specific policies on the use of the Internet for health outreach and education.

Additionally, agencies/programs may have internal policies or electronic barriers, such as

firewalls, that may impede the implementation of Internet-related activities. It is

recommended that agencies review state and local laws and agency/program policies and

consult with IT departments prior to implementing Internet outreach.

2. Background

The Internet has become a means for finding both health information and sex

partners. Finding health information online is one of the most common functions of the

Internet. About 80% of American Internet users have used the Internet to search for

ational Guidelines for Internet-based STD/HIV Prevention - Outreach – March 2008.doc

health information and this number has remained stable for the past 4 years. Over 60%

of these users go online to find information on a specific medical condition and 11%

report seeking sexual health information. About 58% of health information seekers say

the information they found in their last search affected a decision about how to treat an

illness or condition and 55% say the information changed their overall approach to

maintaining their health or the health of someone they help take care of. Also, 54% say

the information led them to ask a doctor new questions or to get a second opinion from

another doctor.

17-19

Not only are people using the Internet as a source of health

information; the information they obtain is influencing the actions that they take.

The Internet is also a well known venue for finding sex partners. People who use the

Internet for seeking sex partners are more likely to report high risk behaviors, such as:

unprotected anal intercourse, anonymous sex, drug use, multiple sex partners, group sex,

and trading sex for money or drugs.

20-25

Because the Internet is both a tool for gathering health information and for finding

sex seekers, it has been posited to be a tool for outreach as well.

26-29

Additionally; online

sex-seeking populations have indicated that health workers should be allowed in chat

rooms and that they would listen to what the health workers had to say.

Trained health educators and outreach workers can provide a variety of services

through the Internet, including prevention education, risk-reduction counseling, referrals

to reliable web-based information, and local resources such as testing and treatment sites,

recruitment into prevention and care programs, promotion of positive health-seeking

behaviors, and support for online communities at risk. Tailored health messages can be

delivered to groups via encounters in chat rooms/social networking sites and postings on

bulletin boards or to individuals during one-on-one private sessions and e-mail. Such

interactions do not require an appointment, can vary in duration and intensity, and meet

people where they are - online.

It is understood that the medium of the Internet is constantly changing and that this

consistent state of flux presents unique challenges. It is our hope that this document will

be a useful tool in the development of new and innovative Internet interventions and that

it will assist programs in overcoming the challenges of working with populations in an

electronic environment.

3. Principles of Outreach

3.1 Cultural and Linguistic Competency

Internet outreach should always be conducted in a culturally and linguistically

competent manner. A key element of any successful STD/HIV prevention program is an

understanding of the community within which prevention activities take place, which

includes the linguistics or language of the community members and the capacity to

communicate with them in meaningful terms. It is important to not only understand the

beliefs, attitudes, behaviors, norms, and values of a population, but also to be able to

understand and convey information to them in their “language”.

ational Guidelines for Internet-based STD/HIV Prevention - Outreach – March 2008.doc

Online communities, just like offline communities, will have their own ‘culture’.

This includes a unique language; one abundant with abbreviations, acronyms, and

inferences. And within the Internet there are a variety of different online communities,

which will generally have different cultures and languages from one another, that is, an

adolescent-focused site will have a very different feel than a site targeting older men-

seeking-men (MSM) or a community of adult ‘swingers’. It is essential for outreach

workers to learn and understand the culture and language of the target populations before

engaging in outreach activities.

Spending time on Internet sites popular with the target population or where members

of the target population congregate will help outreach workers gather information and

learn about the population. Conducting a community assessment, as outlined in Section

4.1, may also help program planners and staff better understand the community in which

they are conducting Internet outreach. It is also recommended that periodic assessment

or quality assurance activities be conducted to ensure the ongoing cultural competence of

the program.

Staff members that perform STD/HIV prevention activities on the Internet are

expected to be culturally competent and skilled at providing health education messages to

the specific, online population that is being targeted. This competence includes an

awareness and understanding of health-education messages and a strong awareness and

Cultural Competence

“Cultural competence is defined as the capacity and skill to function effectively in

environments that are culturally diverse and that are composed of distinct elements

and qualities. Cultural competence begins with the STD/HIV professional

understanding and respecting cultural differences and understanding that the clients'

cultures affect their beliefs, perceptions, attitudes, and behaviors.”

CDC’s Guidelines for Health Education and Risk Reduction Activities, April 1995

http://www.cdc.gov/hiv/resources/guidelines/herrg/index.htm

Linguistic Competence

“The capacity of an organization and its personnel to communicate effectively, and

convey information in a manner that is easily understood by diverse audiences.”

Georgetown University’s Center for Child & Human Development, National Center

for Cultural Competence, November 2004

http://www.nccccurricula.info/linguisticcompetence.html

Tip from the field

Just like offline communities, online communities have

their own ‘culture’ and vernacular.

ational Guidelines for Internet-based STD/HIV Prevention - Outreach – March 2008.doc

comfort level with communication that may be sexually explicit or conform to

community standards that could be in conflict with the personal ethics or values of the

outreach worker. It is recommended that staff participate in cultural competency training

with regards to the specific population being targeted prior to conducting Internet

outreach activities. The staff’s level of cultural competency should be reviewed

periodically during an Internet outreach program. Quality assurance measures should be

instituted to assess the cultural competency of staff performing these activities.

3.2 Client Centered

A client-centered approach strives to provide an environment of empathy,

unconditional positive regard, and acceptance. Workers should be encouraged to accept

their clients where they ‘are’ at the moment and provide support. Being supportive to the

client while providing education is key to the overall success of outreach in online

communities.

3.3 Confidentiality and Privacy

All Internet outreach must adhere to standards of confidentiality and ethics. Agencies

conducting Internet outreach are expected to have a comprehensive confidentiality policy

that specifically covers Internet-related and electronic client-identifying information. The

confidentiality agreement should include consequences for any violation of the policy.

The confidentiality agreement should extend beyond outreach workers and must include

the organization’s Information Technology (IT) staff and all staff that may view or has

access to sensitive information. It should be acknowledged that private website managers

and the IT staff of those sites will also have access to all conversations conducted on their

website and are not bound by the confidentiality policies of public health organizations.

Prior to the implementation of Internet outreach, agencies should consider compliance

with the Health Insurance Portability and Accountability Act (HIPAA), use of firewalls,

security of wireless networks (if used), and whether to permit staff to conduct Internet

outreach from their home computers or portable laptops.

Client-Centered Counseling

“Counseling conducted in an interactive manner, responsive to the individual

patient's needs and requiring an understanding of the unique circumstances of the

patient including behaviors, culture, knowledge, and social and economic status.”

CDC’s Guidelines for Health Education and Risk Reduction Activities, April 1995

http://www.cdc.gov/std/program/partner/ApJ-PGpartner.htm

ational Guidelines for Internet-based STD/HIV Prevention - Outreach – March 2008.doc

Screen names, e-mail addresses, HIV status, and any personal or sexual information

are considered to be identifying information and must be held to the same level of

confidentiality as a client’s first name and surname. Printed documents, such as logs,

reports, or transcripts, containing screen names or e-mail addresses are to be stored in

locked file cabinets. Under no circumstances should outreach workers share any

information about one cyber client to anyone else, whether it is in the ‘virtual world’ or in

the ‘real world.’ For e-mail groups and listservs, it is recommended that member e-mail

addresses not be shared with any other members.

See Appendix A for examples of confidentiality agreements.

3.4 Ethics and Safety

Staff members that utilize the Internet for outreach are expected to identify

themselves to the community in which they are working quickly and professionally by

giving clients their name (or screen name), job title, and agency affiliation. Not

professionally identifying oneself may be interpreted in the online world as lurking,

spying, or some sort of possible entrapment. Staff members should be very cautious

about how much personal information they give online, protecting their personal

information at all times.

Staff should never share or use their personal e-mail address or screen names nor

should they give out the web address of a personal profile or webpage to conduct Internet

outreach. Staff should never share their personal information such as a personal

telephone number, home address, or any other individual contact information.

HIPAA Privacy Rule and Public Health

Guidance from CDC and the U.S. Department of Health and Human Services

Morbidity and Mortality Weekly Report

April 11, 2003/ 52; 1-12

http://www.cdc.gov/mmwr/preview/mmwrhtml/m2e411a1.htm

Tip from the field

All staff with access to information that may identify a client (e-mail

addresses, chat room names, etc.) should sign a confidentiality

agreement. This includes outreach workers and extends to other

agency staff, such as the IT staff.

ational Guidelines for Internet-based STD/HIV Prevention - Outreach – March 2008.doc

At no time should staff ever use a relationship made while conducting Internet

outreach to pursue personal, sexual, or illegal activities in any way. Staff should never

misrepresent themselves or mislead by role (i.e., if they are not medical providers, then

they should not give medical advice to individuals online).

Safety protocols should include procedures on handling abusive or slanderous clients

met on the Internet. Staff should be trained to know how, when, and where to defer these

clients. These procedures may include disengaging from online activities, blocking or

ignoring abusive individuals, or referring difficult clients to a supervisor.

3.5 Approaching Your Audience

There are several approaches Internet outreach workers can take when attempting to

engage a community or encourage individuals into a one-on-one discussion. There are

two approaches that are currently in practice; an ‘active’ and a ‘passive’ approach.

An active approach is generally more aggressive than a passive approach and can

involve techniques that entice users to communicate in private or Instant Messaging (IM)

sessions. The most common technique involves posting health-related messages

regularly and openly in public chat sessions and inviting other users in the public chat

room to enter into a private one-on-one interaction. Be aware that if your approach is too

aggressive, online communities and website owners may view your presence as intrusive.

It is extremely important to always remember that when you are in a chat room or other

social/sexual networking site you are there as an invited ‘guest.’ To be culturally

competent you should always respect members of the website and abide by the social

norms that have been established by the community. An overly aggressive approach can

lead to your organization and potentially all organizations being banned from the website

in the future. Staff should always be aware of this and be respectful of the cultural/social

variations and group norms of different online communities. Tolerance levels will vary

from room to room and website to website.

A more passive approach would involve simply sitting in a chat room without having

introduced oneself or posting any chat dialogue. This approach may be less effective in

terms of reaching significant numbers of people in a cost-effective manner. Some

individual members of online communities may view this approach as ‘lurking’ in a

room; other communities may require that outreach workers remain passive.

Since building trust in any online community is of the utmost importance and is a key

element in the success of Internet outreach, it is recommended that outreach workers

Tip from the field

Aggressive outreach can cause chat room members

to leave the chat room or website and go elsewhere.

ational Guidelines for Internet-based STD/HIV Prevention - Outreach – March 2008.doc

always introduce themselves in a professional manner when entering a chat room or

social/sexual networking site unless directed otherwise by the website owners or

community standards. This introduction should identify the Internet outreach program

and the outreach worker’s purpose, and could include an invitation to IM or e-mail for a

private one-on-one chat. See Appendix B for an example of a one-on-one chat. Because

new users will enter the room after the initial introduction, outreach workers should re-

introduce themselves regularly. The frequency of re-introductions should be limited to

one every 10-15 minutes depending on the level of activity in the chat room.

Many online communities that are ‘profile-based’ will provide profiles for outreach

workers to use. When logging on most profile-based communities, such as Manhunt.net,

your presence will be automatically announced and your profile will be listed as being

‘online’. Once you are listed as being ‘online’ you become available to answer questions

via e-mail, chat, or IM. See Appendix C for examples of Screen Names and Profiles.

Some Internet outreach workers may choose to actively contact online clients they

suspect, from reading profiles or chat room conversations, are practicing high-risk

behaviors. Although it is tempting to reach out to people who are engaging in high-risk

behaviors, individuals must be actively ready to change, otherwise outreach may be

ineffective, as posited by Stages of Change Theory.

Engaging individuals before they

are ready will cause them to ignore you at best, and at worst, place a negative mental

barrier to your message and possibly your organization, now and in the future. Instead,

think of an outreach worker’s presence in a chat room or on a website as a subtle

reminder to members that risky behaviors can be harmful to one’s own health and that

outreach workers will be able to serve as a reliable resource should members move to a

stage where they are ready to make a change. Moreover, being too aggressive during

outreach can threaten trust and rapport-building and will often be met with negative

feedback from the online community. Should there be significant complaints regarding

outreach on any given site, it is possible that all outreach workers, not just your agency,

could be banned from the site or chat room. This approach can also hurt an agency’s

reputation in the community, potentially leading to complaints from community members

or lack of trust in the agency’s other programs and services. These guidelines do not

recommend using this approach.

Recommendation

Always introduce yourself in a professional manner upon

entering a chat room or social/sexual networking site.

ational Guidelines for Internet-based STD/HIV Prevention - Outreach – March 2008.doc

4. Getting Started

There are many similarities between conducting virtual outreach and outreach in

more traditional street and community settings.

Many websites contain virtual elements or features that mirror venues or aspects of

venues in traditional settings. Public chat rooms and social networking communities are

analogues to community centers, bars, or other areas where public conversations can take

place. IM is analogous to one-on-one or private communication. Both elements (public

chat and private IM) have the potential to be used for risk reduction, counseling, or other

individual-level interventions (ILI).

Just as in traditional settings, some personal information in a profile is public, while

other pieces can be kept private but, generally speaking, profiles are the public portion of

a person’s persona. Many websites allow members to ‘lock’ or keep private certain

pieces of personal information, including pictures, text, and personal interests.

When joining a website, it is recommended that you take some time to acquaint

yourself with the community you are now a member of; read through profiles, examine

the search features, go into the chat room, and listen before interacting within the

community.

In addition to reviewing the community for content and its general culture, time

should be spent learning the features of the site. Acquaint yourself with how to use the e-

mail system, chat rooms, instant messaging, search, and the other features of the site.

For further assistance with getting started see Appendix D; a checklist of creating

guidelines for Internet-based outreach.

4.1 Community Assessment

Prior to designing and/or implementing an Internet outreach program or joining a

website for the purpose of Internet outreach, it is recommended that agencies assess the

community to learn more about the attitudes, behaviors, language, community norms, and

values of the targeted population(s). Assessment activities can be informal or formal. An

informal assessment may include feedback from staff, anecdotal observations of potential

Internet venues, and consultations with community leaders, gatekeepers, and client

advisory boards. A formal assessment might include online surveys, interviews, or focus

groups.

A community assessment may assist in the following ways:

• Defining the purpose and scope of your Internet outreach program.

• Establishing appropriate program goals, objectives, and activities.

• Defining and learning more about the target population.

• Identifying online venues that will help you to reach the target population.

ational Guidelines for Internet-based STD/HIV Prevention - Outreach – March 2008.doc

• Identifying social attitudes, behaviors, perceptions, and vernacular of the

community.

• Providing the basis for evaluation as part of formative and summative studies

of interventions.

• Establishing community-based support for the proposed activities.

It is recommended that periodic assessment or quality assurance activities be

conducted to ensure the ongoing involvement of the target community and to ensure that

the program is meeting the needs of the community. The CDC’s ‘Health Education and

Risk Reduction Guidelines’ (HERR)

provide more information about community

assessment for health education programs.

When considering conducting Internet outreach, an agency should be aware of what

other community-based organizations and similar agencies are doing on the Internet.

Questions to ask could include:

• What agencies are already online?

• What online venues are currently being served by those agencies?

• What methods are being used by the agencies in the venues (outreach, health

communication, and/or partner notification)?

Agencies should also communicate with the state or local health department to

coordinate efforts as much as possible. To minimize over-saturation within a venue or an

area, one ideal scenario would be to have an experienced point person in each agency that

collaborates with other agencies and organizations.

4.2 Choosing a Population to Target

About 70% of all U.S. adults

and 87% of U.S. teens

are online. With millions of

websites and billions of web pages, targeting the best website or chat room to conduct

your outreach is extremely important. Internet outreach should be cost effective and

directed towards populations at increased risk of becoming infected with STDs/HIV or, if

already infected, of transmitting the infection to others. Some research has shown that

individually focused interventions, such as street outreach, can be cost effective when

Tip from the field

Useful websites for information on conducting community assessments:

HIV Health Education and Risk Reduction Guidelines - Community Needs Assessment

http://www.cdc.gov/hiv/resources/guidelines/herrg/gen-con_community.htm

University of Florida/IFAS Extension Electronic Data Information Source

http://edis.ifas.ufl.edu/FY501

ational Guidelines for Internet-based STD/HIV Prevention - Outreach – March 2008.doc

targeted toward high-risk, STD-prevalent populations, such as MSM, but not for low-

prevalence populations. For low-prevalence populations, structural interventions, such as

condom availability, may be more cost effective.

Disease Intervention Specialists (DIS) often ask STD patients about sex partners met

through the Internet; therefore, local surveillance data may help to identify appropriate

online venues where the target population can be reached. Agencies should also review

local health department surveillance data for pertinent information to ensure that

appropriate populations are targeted. Agencies should define the specific population to

be served and determine the general needs of this population. Based on the information

gathered, the agency can then make an educated decision as to what specific online

venues are best suited for Internet outreach and what time of day is best for conducting

the work. Additional information about where high-risk individuals go online should be

obtained from community assessment activities prior to, during, and after program

implementation.

Because the Internet is an ever-changing environment, online venues or times for

reaching a specific population online may change frequently. Therefore, flexibility and

the monitoring of Internet trends are very important.

4.3 Working In Online Venues

Before an organization actually goes online, they are strongly encouraged to develop

formal guidelines and trainings on how to conduct Internet outreach that is specific to

their program and locale. Organizations should conduct a needs assessment (formal or

otherwise) and contact experienced programs to share information and obtain guidance

from those that have already successfully conducted Internet outreach. For contact

information on organizations with experience, visit or contact the National Coalition of

STD Directors (NCSD) at their website - www.ncsddc.org.

In addition to formal guidance, organization-level policies for Internet use should be

reviewed. Clear separation between the personal use of the Internet and work use should

be established and documented prior to the implementation of any program that utilizes

the Internet. Additionally, outreach staff may need specialized training.



Similar to street and community outreach, it is imperative that agencies make every

effort to establish contact with, and to obtain permission from, website owners or the

management of the online venue, prior to conducting outreach. Some sites may require

that you establish an official relationship with them before you conduct outreach on their

site. Go to the NCSD website for an example of guidelines for working with Manhunt.

Agencies should recognize the limitations within each venue. For instance, some

websites may permit agencies to set up an online profile and exchange e-mails with its

members, but may not allow agency staff into member chat rooms. Bulletin board

monitors may allow agencies to post event announcements, whereas a social network

may prohibit unsolicited e-mail but will allow chats with members. Finally, many

websites prohibit public health entities from providing any kind of services on their site.

ational Guidelines for Internet-based STD/HIV Prevention - Outreach – March 2008.doc

Establishing an official relationship with the website where outreach is to be

conducted is the ideal situation. Contact and/or permission may not be granted or

communication with the venue may be impossible to establish. In this situation, it is the

program supervisor’s decision on whether to proceed.

When working through online venues, programs should be aware that they are in a

public environment that is owned and hosted by a private company. In most cases,

outreach workers will be invited guests, in other cases outreach workers may be seen as

intruders. Every effort should be made to ensure that a positive relationship is formed

with both the members in the venue and the venue owners and employees.

Online outreach workers should remember that users are generally online for

purposes different than their own and that health messages may not always be welcomed.

Considering that you are a guest in a venue that most likely will be part of a private

business, your tone and behavior should be welcoming and understanding. Aggressive

behavior will generally be met with conflict.

Unlike outreach in the real world, outreach and communication online is subject to

sudden disconnection. It is possible to be blocked by an individual member or by the

venue itself. Be aware that outreach workers can be blocked and banned from a venue

abruptly and without notice or warning.



4.4 Accessing Adult Sites

To conduct Internet outreach, employees must have access to websites with sexually

explicit material. Online outreach will be more successful if outreach workers are

empowered to meet people where they are. It can safely be assumed that high-risk sex

behaviors will take place on sex-positive websites. Giving employees access to adult

sites can be a sensitive issue for some agencies. To ensure that problems are avoided,

outreach programs should work with their IT department to determine how online

outreach workers can get past firewalls and other security systems as well as to assist in

the creation of clear guidelines that grant access to sites with sexually explicit content.

Agency guidelines should define what sites are to be accessed, when, and for what

purpose. See Appendix E for Suggested Rules or Code of Conduct for workers in this

area. Also refer to section 3.4, Ethics & Safety, for additional information.

Tip from the field

Most programs that conduct online outreach have, at one

time or another, been removed, blocked, or had their profile

deleted or their account revoked from a website.

ational Guidelines for Internet-based STD/HIV Prevention - Outreach – March 2008.doc

To ensure access to sexually explicit websites, some programs have an individual

computer or a network that is dedicated for Internet outreach. This computer or network

is separated from the agency’s primary computer or network. A configuration such as

this can help to protect the primary server or network from viruses and hackers while

providing a confined access point where sexually explicit websites can be reached.

4.5 Website Terms of Service

Most websites will have Terms of Service that usually include rules of conduct,

regulations, privacy policies, and more. It is important that agencies conducting Internet

outreach read and understand these Terms of Service and any other guidelines or binding

agreements where prevention activities are conducted. Usually, signing up to join a site

implies agreement with the site’s Terms of Service. It is within a website administrator’s

authority to remove someone from a chat room/website or to terminate an account for a

violation of their Terms of Service.

Websites typically post frequently asked questions (FAQ) that will guide users and

outline appropriate behavior in the venue. For example, a FAQ could include guidelines

on how to introduce oneself to another member, direct a question or response to a specific

user, or how to report a disruptive user.

5. Program Implementation

The CDC’s ‘HIV Health Education and Risk Reduction Activities Guidelines’

(HERR)

list a number of core elements that should be considered in a health education

and risk reduction program and evaluation activities. These core elements also apply to

Internet outreach and are listed below, in chronological order, with a few minor changes.

5.1 Recommended Internet Outreach Program Core Elements

• Conduct community assessment activities.

• State realistic, specific, measurable, and attainable program goals and

objectives.

• Identify methods and activities to achieve specific goals and objectives.

• Clearly define staff roles, duties, and responsibilities.

• Define the populations to be served by: geographic locale, risk behavior(s),

gender, sexual orientation, age, and race/ethnicity.

Tip from the field

Health workers posting health messages may be thrown

off websites and blocked for violating the Terms of

Service of a website.

ational Guidelines for Internet-based STD/HIV Prevention - Outreach – March 2008.doc

• Assure that educational materials and messages are relevant, culturally

competent, and language/age-appropriate.

• Consult with IT staff to ensure program capability with network and firewalls,

enable access to online venues, and support confidentiality measures, like

password-protecting computers.

• Include professional development for all program staff.

• Include a written policy and personnel procedures that address stress and

burnout.

• Include written procedures for the referral and tracking of clients to

appropriate services inside and outside of the agency.

• Provide for collaboration with other local service providers to assure access to

services for clients.

• Assure confidentiality of persons served.

5.2 Frequently Asked Questions and Answers (FAQ/A)

Giving out factual information on HIV, syphilis, and other STDs, as well as risk/harm

reduction and sexual health information is important to the success of any Internet

outreach program. In addition to training on these topics, staff may want to use a list of

frequently asked questions (FAQ). Not only can a FAQ ensure the accuracy and

consistency of information disseminated online, but it can also make Internet outreach

easier. When an online client asks a FAQ (e.g., what are the risks of oral sex?), outreach

workers can simply cut and paste answers into the chat, IM session, or e-mail. For

examples of FAQ documents, see Appendix K.

5.3 Referral to Resources

The primary objective of many Internet outreach programs is to refer clients to web-

based informational and educational resources and local service providers. Agencies

should maintain an up-to-date resource guide for online resources and local area service

providers, including: health care agencies, support groups, and prevention services

providers. It is important to collaborate with community hotlines for crises or

emergencies that may occur during Internet outreach. Agencies should have a list of

appropriate referral sources, including: suicide or crisis hotlines, child protective services,

and agencies working in domestic violence. These types of events should be documented

on an incident report and given to appropriate supervisors.

5.3.1 Recommended Types of Resources

The following resources are suggested for Internet outreach. It may be necessary to

expand this list for your community needs.

• STD and HIV information, testing, and treatment

• Mental health information and counseling services

• Substance abuse information, counseling, and treatment

• Sexual health and safe sex information

ational Guidelines for Internet-based STD/HIV Prevention - Outreach – March 2008.doc

• Domestic violence information and resources

• Rape Crisis Centers

• Family Planning Resources

• Sexual addiction information and resources

• Youth-oriented information and resources

• Transgender information and resources

Internet-outreach workers should be well-versed in and knowledgeable about these

resources so they can readily refer online clients to them. Referrals to resources should

be appropriate to the clients' needs and should be documented and tracked when possible.

If online clients have given Internet outreach workers permission to contact them after

the initial contact, it is recommended that staff follow-up with the clients to see if they

reviewed or used the resource(s) given. Follow-up interchanges should be documented

including when there is a denial of permission for further contact.

5.4 Recruitment into Other Prevention Programs

Conducting Internet outreach can be an excellent tool for recruiting clients for

STD/HIV testing, treatment, and other prevention interventions

. It can also be used to

recruit individuals to participate in advisory boards or focus groups or to complete

surveys for quality assurance or research.

5.5 Follow Up

Following up with online clients may help to improve the likelihood that they will

obtain the information and services they need. Well-documented follow up also helps

support Internet outreach by proving its impact or effectiveness. It is recommended that

Internet-outreach workers ask for the client’s permission to follow up with them via e-

mail or IM, and ask if the staff member can save them to their buddy list (if available).

Ideally, quick follow up with each client is desired; however, follow up may be difficult

with clients that frequently change screen names or do not login often. Follow up as a

performance indicator for staff is not advised due to these and other issues.

5.6 Evaluation of Internet Outreach Program and Activities

Organizations conducting Internet outreach should have mechanisms in place to

ensure that the program is meeting its goals and objectives, that factual health-related

information is being delivered appropriately, and that all related program policies and

procedures are followed.

Logic models are an effective way of clearly outlining the steps and desired

outcomes

of a program. These tools also help with program evaluation by providing specific

elements in the program to assess. For examples of logic models, see Appendix F. The

CDC recently released a valuable evaluation manual specific to STD programs, ‘Practical

Use of Program Evaluation among STD Programs’.

ational Guidelines for Internet-based STD/HIV Prevention - Outreach – March 2008.doc

We recommend that STD programs use this manual to guide their evaluation efforts,

including the development of a logic model.

Quality assurance can include various data collection forms or databases, including

contact and referral logs, activity report forms, and activity observation tools. For

examples, see Appendices G-J. Agencies may want to consider collecting printed or

electronically stored transcripts of online activities and e-mails when feasible (some

websites restrict the ability to cut and paste or otherwise save chat room or messaging

text). These transcripts can then be used for qualitative analysis purposes or to determine

factors that influence high-risk behaviors online. Program modifications can then be

made based on this analysis.

Ongoing participation from the target population, through individual and group

interviews, client advisory boards, client satisfaction surveys, and other quality assurance

measures, will help assure that Internet outreach programs are accepted by the

community.

Process measures, such as the number of individuals that were educated, number

referred to services, or time spent in interactions can be captured by staff using logs or

databases.

Outcome measures can be determined through the development of a logic model and

the community assessment process. The data collected could serve as baseline and

formative evaluation. Outcome objectives could include the number of individuals from

the target population successfully linked to other services, the amount of disease

identified after individuals are tested, or behavioral changes seen in profiles or through

follow-up assessment activities.

Below is a list of some of the ways in which an online outreach program can be

evaluated for quality assurance and effectiveness.

• Develop a process evaluation.

• Require consistent and accurate data collection procedures.

• Supervisors should periodically provide outreach staff with evaluations and

feedback on performance.

• Develop a means for clients to provide feedback or grievances.

• Designate staff responsible for evaluation and quality assurance activities, for

compiling and analyzing data, and for documenting and reviewing findings.

• Define methods for assessing progress toward stated process goals/outcome

objectives.

Tip from the field

Obtain a copy of the manual:

Practical Use of Program Evaluation among STD

Pro

rams http://www.cdc.

ov/std/Pro

ram/pupestd.htm

ational Guidelines for Internet-based STD/HIV Prevention - Outreach – March 2008.doc

• Include mechanisms for measuring the use of referral services.

• Provide findings for program modifications.

5.7 Staffing

5.7.1 Effective Internet Outreach Staff

Not everyone has the skills that are necessary to provide outreach on the Internet.

Agencies should be selective in choosing staff that will perform Internet outreach.

Potential staff should be: Internet savvy, demonstrate at least intermediate computer

skills, possess proficient and accurate typing skills, have a working knowledge of quality

Internet resources, and be familiar with emoticons, electronic shorthand, and other online

languages.

In addition to having basic skills and experience in STD/HIV health education, staff

should be sensitive and non-judgmental regarding community norms, values, traditions,

and cultural beliefs of the target population. Staff should be as knowledgeable as

possible about the populations being served. Some groups have found it easier to use a

peer-to-peer approach as shared common experiences increase the level of trust and

rapport with the online community, e.g., MSM staff conducting outreach to online, MSM

communities. This also allows staff to act as role models for the clients they serve. Staff

should not only be emotionally supportive of their clients (client-centered) but also

should be an advocate for the population. This includes acting as a liaison between the

online community and having the knowledge of local community resources and the

ability to refer clients to real-world providers.

Staff should have a clear understanding of boundaries and how and when to

disengage clients who, for example, are being sexually aggressive or abusive, and when

to end sessions that are no longer productive. Overall, staff should be comfortable in the

outreach role and willing to conduct the activity, as well as understand the goals and

objectives of the program.

5.7.2 Use of Volunteer Peer Educators

Agencies that provide Internet outreach may choose to use volunteer peer educators

to conduct online activities. As defined by CDC’s HERR,

peer education refers to a

role-model method of education in which trained, self-identified members of the client

population provide STD/HIV education to their behavioral peers. Additionally, the use

of volunteer peer educators can sustain intervention efforts in the community, often

Tip from the field

To minimize staff burnout, limit online

shifts to 2-3 hours.

ational Guidelines for Internet-based STD/HIV Prevention - Outreach – March 2008.doc

influencing community norms, long after the professional service providers are gone.

The following protocols are recommended when using volunteers:

• All volunteers should be fully trained on Internet outreach protocols,

specifically those related to safety, confidentiality and ethics.

• All website accounts should be maintained by the program director, including

username and passwords. A volunteer should never use his/her own personal

account to conduct outreach on behalf of the agency.

• All volunteers should focus on marketing-related, outreach topics such as

promoting an agency's upcoming testing event or other health-related services,

unless they have been through an agency-approved training program.

• Volunteers should complete a series of role-playing conversations with the

agency supervisor to prepare the volunteer.

• Volunteers should complete a log after each outreach session, recording any

incidents.

• Volunteers should be closely monitored by trained staff and should be

provided with regular feedback.

While volunteer peer educators can be very powerful, they cannot replace

professional health educators; they should only complement the trained staff.

5.7.3 Internet Etiquette

Internet outreach programs will encounter individuals that will want to casually chat

with the outreach worker. Just like in any community outreach setting, small talk can

help establish rapport and normalize an agency’s presence there. Internet outreach

workers should be reminded that maintaining appropriate boundaries between themselves

and the client is extremely important. No outreach worker should become too casual,

‘talkative’, or familiar with the client. The worker should always use standard outreach

education skills and keep the conversation focused on prevention and the promotion of

sexual health.

In general, when conducting Internet outreach:

• Make no assumptions about clients.

• Ask open-ended questions as often as possible to gain more information.

• Don’t give personal advice or tell clients what they should or shouldn’t do

• Include risk and harm-reduction messages.

• Use third-person techniques (e.g., “Most people consider unprotected oral sex

safe.”).

• Answer questions with facts as often as possible (e.g., “We know that unprotected

oral sex puts men at a higher risk for STDs like syphilis or gonorrhea.”).

• Try to keep responses on an impersonal level and try not to make statements that

are, or might seem to be, a personal opinion.

ational Guidelines for Internet-based STD/HIV Prevention - Outreach – March 2008.doc

• Provide relevant and up-to-date referrals for services.

Internet outreach workers should practice good manners when conducting outreach.

Because chat room/website norms and values change from room to room and website to

website and/or vary at different times of the day, Internet outreach workers should always

be aware of the culture of the chat room/website they are in at a given time. Here are

some courtesy tips:

• Don’t type in all caps; it is considered to be the equivalent of shouting in

cyberspace.

• If staff have to step away from the computer or are actively chatting in more

than one IM or private session, they should tell the other clients they will ‘be

right back’ (brb)*.

• Staff should be courteous and respectful at all times.

• Staff should not ignore IMs unless they are from potentially abusive chatters.

• Staff should respond to all e-mail in a timely manner, even if the e-mail is

brief, simply gives a referral, or states that a response with a more in-depth

answer will be sent soon.

* For assistance with chat acronyms, abbreviations, and meanings see Appendix L.

Communication in chat rooms/websites or via e-mail and IM, although similar to

person-to-person communication, can vastly differ. Without the use of voice inflection

and tone, or body language and other gestures, written communication can come across

as cold, angry, or aggressive. Great care should be used when composing an e-mail or

chatting online.

5.8 Training

Initial and ongoing training is important to the success of staff conducting Internet

outreach. Specific skills-based training for Internet outreach may include hands-on

training, a review of Internet shorthand, emoticons, and other online languages, and can

also include their understanding of computer equipment, software, and referral resources.

Other suggested areas in which Internet outreach staff should receive training are listed

below. Many of these are adapted from the CDC’s HERR.

5.8.1 Suggested Training Topics

• Surfing the web/acclimating to online environment

• Information on HIV, STDs, and sexual health

• Information on substance use/abuse

• Orientation to human sexuality, including diverse lifestyles and sex practices

• Orientation to safer sex and safer drug-using guidelines

• Understanding of harm reduction, risk-reduction, and prevention counseling

• Thorough knowledge of confidentiality, privacy, and ethics

• Review of policies on security

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• Sensitivity to issues for persons living with HIV/AIDS and STDs

• Cultural diversity and cultural competence

• Orientation to the agency, community, and available community resources

• Orientation to useful health-related websites and other Internet resources

• Skills in group facilitation for activities in chat rooms/websites

• Dynamics of community and agency collaboration

• Introduction to behavior-change theories

• Understanding of motivational interviewing techniques

• Build communication skills (e.g., active and reflective listening, clear written

communication, and client-centered interaction)

• Basic knowledge of family planning and contraception

• Knowledge of treatment and therapy for people living with HIV/AIDS and

STDs

• Orientation to crisis intervention

5.9 Online Screen Names and Profiles

The screen name and profile of each Internet outreach worker are very important

elements for an Internet outreach program. Screen names should relate or refer to the

program or agency and should never be sexually suggestive. Profiles should be

developed with program objectives in mind and serve as a promotional outlet for the

program. Profiles should not contain sexually explicit information. When creating a

profile, the official agency/organization logo should be used as the account picture and

other identifying information should be filled out respective to ISP/website protocol for

health departments and community-based organizations. Some websites may require

certain information be contained within your profile. For example, Manhunt recently

created a standard logo for all profiles conducting IPS or outreach in order to provide a

validation of legitimate health-related profiles.

Like a first impression, online clients can learn a lot about the program with a quick

glance at the online profile. Below are some suggested elements to include in an online

profile. To keep clients’ interest, it may be necessary to change elements of a profile

frequently. This can easily be done by revising a line or two of text, adding a recent fact

or statistic about health, promoting a testing site or upcoming special event, or listing a

link to a new or updated website of interest. See Appendix C for examples of program

profiles and screen names.

5.9.1 Essential Elements

• Profiles should specifically identify the agency name, staff, and job title.

• Profiles should include an invitation to IM, chat, or e-mail the outreach

worker.

• Profile pictures should contain logos for the agency when possible.

• Profiles should be viewed as marketing tools and should fit the venue in

which they are posted.

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5.9.2 Inappropriate Elements

• Profiles should not contain sex statistics, such as penis size, sexual position of

choice, sexual desires, etc.*

• Profiles should never contain personal e-mail addresses or

websites/homepages/blogs.

• Profiles should never contain numbers to personal cell phones, home phones,

pagers, etc.

• Profiles should never contain personal pictures or statements saying you can

e-mail personal pictures.

• Profiles should never contain links to websites that sell products not related to

sexual health.

• Profiles should never contain links to pornographic websites or sites that sell

pornography.

• Profiles should never contain discriminatory or judgmental statements.

• Profiles should never contain the HIV status of the outreach worker.

* Some sites require information of this type be completed within a profile. In

this case options that include safer sex should be selected.

Because some online clients may come across an Internet outreach profile after

performing a profile keyword search, it is recommended that profiles contain a variety of

keywords related to sexual health and STD/HIV prevention. The following keywords are

examples: sex, barebacking, HIV, STD, syphilis, sexual addiction, safe sex, oral sex,

crystal meth, raw, and drugs. These keywords should be used in a context that will

convey to the client that you are available to discuss these topics as they relate to sexual

health and STD/HIV prevention. For examples see Appendix C.

Tip from the field

Include a timeframe that a person may expect a response, e.g.,

‘We check our profile every business day and will try to

respond to your e-mail within 48 hours.’

Tip from the field

When setting up your profile, there are often choices that

can be checked (e.g., HIV+). By checking off all choices,

your profile will show up in more searches.

ational Guidelines for Internet-based STD/HIV Prevention - Outreach – March 2008.doc

5.10 Features in Online Venues

5.10.1 Chat Rooms

Chat rooms are online venues where Internet outreach can be conducted. Chat rooms

in the virtual world are similar to bars, clubs, or community centers in the real world.

The chat room members and the room’s group norms, behaviors, and/or attitudes may

vary from day to day, time to time, and room to room. Chat rooms may be very active

with a steady flow of exchanges between chatters or they can be extremely quiet even

when the room is full. Each chat room has its own personality and this personality

generally reflects the personality of the community. Some users of chat rooms participate

in what is called ‘lurking’. A user is lurking when they are logged in to the chat room

and are not active in the room. It is possible that they are engaging in private chats with

others.

To be successful in the erratic online environment, outreach workers may need to use

different techniques in different chat rooms to engage individuals in discussion. Clear

and open-ended questions posted to the chat room at the initial entry into the room and in

increments during the outreach period (not more than four times in an hour, depending on

the level of activity within the room) may create opportunities for discussion or private

chats. For an example of a chat session see Appendix B.

5.10.2 Instant Messaging

Instant messaging (IM) is a real-time interaction that sometimes requires software to

be downloaded and/or a profile to be created. Unlike the group atmosphere of a public

chat room, IM provides an environment where Internet outreach workers can have a one-

on-one conversation with individuals. These conversations cannot be viewed by others in

the public chat room.

IM has seen an increase in popularity. According to the Pew Internet & American

Life Project, the growth rate in IM users between 2000 and 20004 was around 29%. In

2004, Pew reported that 53 million American adults, approximately 42% of Internet

users, were using instant messaging.

AOL’s 2005 instant messaging survey revealed that 70% of Internet users use IM and

38% of IM users send as many, if not more, IMs than e-mails. According to AOL, 90%

of 13-21 year olds use IM followed by 80% of 22-34 year olds, 65% of 35-54 year olds,

and 49% of those aged 55 and older.

IM interactions can be used to answer questions, discuss safer sex and harm/risk

reduction techniques, help improve communication and negotiation skills, refer to online

and real-world resources, and recruit into prevention or care services. When using IM,

outreach workers should use specific skills and strategies, such as open-ended

questioning and active listening.

ational Guidelines for Internet-based STD/HIV Prevention - Outreach – March 2008.doc

In general, there are three types of IM. Programs such as Skype, AIM, MSN,

Yahoo!, ICQ, and others, offer an IM program (also called a chat client) or piece of

software that can be downloaded, installed, and used to contact buddies or other users of

the same product (usually through a screen name or e-mail address).

The second type of IM is one that is available only within a specific website and is

exclusively used by members of that website. This type of IM is usually linked to a

member’s active profile. Websites such as Gay.com, Manhunt, and MySpace use

proprietary IM that is available only on their sites and linked to the user’s profile.

The third type of IM is usually referred to as private chat and is usually available only

through a public chat room. Users of a public chat room will use private chat as a means

to hold a private conversation. In a chat room you may be asked to ‘go private’. In most

chat rooms this is done by simply double clicking on the screen name of the member

making the request.

IM, although generally perceived as private, is still communication between

networked computers through the Internet and therefore is not 100% secure or completely

private. It is important to remember that conversations conducted through IM can, in

most cases, be saved, printed, e-mailed, or distributed in other ways. Additionally, these

can be viewed by the IT staff of the website and of the program organization. The

highest level of professionalism should always be maintained.

5.10.3 E-mail

E-mail can also be used to communicate with an individual as a one-on-one

conversation; however, e-mail may have a delay in response that IM does not. Be aware

that some people share an e-mail address and that e-mail might not be as private as an IM

session. Outreach workers may want to ask clients that want to communicate via e-mail

if their e-mails can be viewed by other people.

E-mail can also be an effective tool for follow-up with clients. All e-mail should be

responded to in a timely manner, typically within 24-48 hours, even if the return e-mail is

simply to inform the client that an e-mail was received and an answer is forthcoming.

Tip from the field

Some IM programs have a log feature that can automatically save

chats and allow you to print them as needed. You can typically

find this feature under the Preferences settin

ational Guidelines for Internet-based STD/HIV Prevention - Outreach – March 2008.doc

E-mail groups or listserves can be used to communicate to larger groups of people in

a short amount of time. This tool can be used to promote agency services and events and

to disseminate up-to-date information, articles, or statistics on STDs/HIV. However, use

of e-mail groups or listserves should be done only if the e-mail user has given explicit

consent to receive mass e-mails or has voluntarily joined the list.

Remember that e-mail is a written form of communication and e-mails should be

drafted with care and spell checked before sending.

An e-mail, once sent, passes through many servers throughout the Internet. E-mail is

not a secure means of communication and can be manipulated, copied, printed, and

forwarded.

5.10.4 Bulletin/Message Boards and Forums

Electronic bulletin/message boards and forums allow users to post and read messages

that have been posted on a website. A variety of websites offer bulletin boards; therefore,

agencies may have to research and assess what bulletin boards are most effective at

reaching the intended target population. (See Section 4.1, Community Assessment).

These information-sharing bulletin boards can also be used to promote agency services

and events and disseminate up-to-date information, articles, or statistics on STDs/HIV.

Posted messages are public information and available to anyone who visits the bulletin

board. Like messages posted on a physical bulletin board, these messages remain on the

board until the message is removed. Bulletin boards (e.g., www.craigslist.org) may be

useful for posting health-related messages, promote events, recruit participants in

surveys, and advertise programs or agencies.

5.10.5 Social and Sexual Networking Sites

Social networking sites (SNS), like MySpace, Friendster, or Facebook, and sexual

networking sites, like Manhunt, Adam4Adam, and M4MWorld, are additional venues

that can be used to conduct Internet outreach.

Fifty-five percent of online teens use social networks and have created online

profiles. 20% of online adults report having a social networking profile.

Tip from the field

Check your inbox at least once a day.

Tip from the field

Designate a back up person to check e-mail

when an outreach worker is out of the office.

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SNS are used for a variety of reasons including to enhance existing relationships, to

form new relationships, sexual and otherwise, to express oneself, as a communication

tool. How a SNS is used will vary by demographics, geographic location, behaviors,

interests, etc. For example, the SNS Facebook was created by a college student as a way

to stay in contact with other college students; hence, the site’s membership base at the

time was generally those that are of college age. The website Manhunt is a website

created for the MSM community and is adult in nature. The average age for a Manhunt

member is generally older than the average for a member of a site such as MySpace. As

sites grow their population tends to diversify. When it was created, MySpace was a site

that was intended for musicians and users under 30 but, as the site grows in popularity, it

has become more diverse in its membership.

Strictly speaking, there has traditionally been a distinction between social networking,

dating, and ‘hook-up’ sites. All SNS are created to connect people with similar interests,

but it is important to be aware of the differences between traditional SNS such as

Facebook, Friendster, or MySpace; dating sites such as Match, BlackPlanet, or

eHarmony; and hook-up sites such as Manhunt, Adam4Adam, or M4MWorld.

There are some basic functions and features that most SNS have in common, such as

a search feature, profiles, and a proprietary e-mail system, where member e-mail can only

be accessed within the website.

It is recommended that agencies seek permission from these sites prior to conducting

outreach on them, as many of them have traditionally not allowed public health providers

to conduct outreach prevention services.

6. Limitations of Internet Outreach

Despite the versatility of the virtual setting and the variety of possible activities,

Internet outreach has its limitations. Priority should be given to using methods for

outreach that maximize time and energy. Internet outreach can reach a population of men

and women that might be otherwise unreachable, but this comes at a cost.

The most significant portion of the cost involved with Internet outreach is related to

staff salaries and time. To maximize the cost effectiveness of Internet outreach, the

selection of staff is of the utmost importance. Selecting staff members that are capable of

multitasking and are computer/Internet savvy is key to controlling the most significant

costs for Internet outreach. It is important to note that, for agencies with limited

resources, other forms of Internet work such as partner notification and health

communication (as outlined in the other sections of these guidelines), might be

considered more cost effective over Internet outreach.

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When considering costs, organizations should remember the importance of choosing

websites and times to perform outreach. To be as cost effective as possible, an agency

may need to create options, such as flexible work schedules, to ensure that Internet

outreach is being performed at the peak times that the high-risk target population is

online.

7. Summary

When carefully planned out and implemented, online outreach can be a useful way of

providing STD/HIV health information, prevention messages and referrals to online

populations.

We hope this document will be a useful guide for all STD/HIV programs. This is the

first iteration of many to come. We hope these guidelines will be living documents, that

is, documents that are constantly changing and continuously being updated based on

research and program experience, so that they remain relevant and useful.

ational Guidelines for Internet-based STD/HIV Prevention - Outreach – March 2008.doc

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Glossary

AIM – America Online’s (AOL) instant messenger. The use of this messenger is not

limited to AOL subscribers. One can maintain buddy lists on AIM. The AIM buddy list

allows you to store information about your buddies and to know when they are logged in

(online) and available for instant messaging.

Attachment - A file that is sent as part of an e-mail message but that is not part of the

main message. Images, programs, or word processor files are usually sent as

attachments, because most e-mail programs allow only plain text in the body of the

message.

Atom – An evolving protocol for syndication and sharing of content. Atom is being

developed as a successor to and improvement over RSS (see below). It is more complex

than RSS while offering support for additional features such as digital signatures,

geographic location of author, possibly security/encryption, licensing, etc. Like RSS,

Atom is an XML-based specification.

Avatar - A graphical image of a user, such as used in graphical real-time chat

applications, or a graphical personification of a computer or a computer process, intended

to make the computing or network environment a friendlier place.

Bandwidth - How much data you can send through a connection. Bandwidth is usually

measured in bits-per-second (bp)s. A full page of English text is about 16,000 bits. A

fast modem (used in a dialup connection) can transfer about 57,000 bits in one second. A

full-motion full-screen video would require roughly 10,000,000 bits-per-second,

depending on compression.

Blog - A blog is basically a journal that is available on the Internet (or web). The activity

of updating a blog is blogging and someone who keeps a blog is a blogger. Blogs are

typically updated daily using software that allows people with little or no technical

background to update and maintain the blog. Postings on a blog are almost always

arranged in chronological order with the most recent additions featured most

prominently. It is common for blogs to be available as RSS feeds.

Bookmark (or favorite) - Most Web browsers give you an option of adding a URL to a

‘HotList’ or by marking it with a ‘bookmark’. By doing this, you can store the linking

information (the URL) to any Web pages you plan to revisit. That way, if you decide to

go back to a website, its URL is already catalogued and at your fingertips for easy

reference. (Spry Mosaic uses ‘hotlists’, Netscape Navigator uses ‘bookmarks’ and

Microsoft Internet Explorer uses ‘favorites’). Other Web browsers may use those terms,

or may call their URL-saving feature something else.

Bot - Synonymous with spider, which is the first part of a search engine. It automatically

and frequently searches the Web to find pages and updates its database of information

about old Web sites.

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Broadband - Generally refers to connections to the Internet with much greater

bandwidth than you can get with a modem. There is no specific definition of the speed of

a broadband connection but in general any Internet connection using DSL or via cable-

TV may be considered a broadband connection.

Browser - (see Web Browser)

Bulletin boards - Also known as a message board or BBS (Bulletin Board System) -

Bulletin boards are a place for people to virtually meet online where they can post

messages and respond to each other. These usually are set up to discuss a specific topic

(e.g., children, computing, HTML).

Chat rooms - A chat room is a virtual room where people can communicate in real time

while on the Internet. Users type their messages with a keyboard and the entered text

will appear on the monitor, along with the text of the other chat room visitors.

Cookie - A small file that is used as a mechanism for transmitting information containing

information and data between a website and a browser. This method is used by web

designers to track visitors to a website so the visitors do not have to enter the same

information every time they go to a new page or revisit a site. For example, web

designers use cookies to keep track of purchases a visitor wants to make while shopping

through a web catalog.

Favorite – (see Bookmark)

FTP - (File Transfer Protocol) - A very common method of moving files between two

Internet sites. FTP is a way to login to another Internet site for the purposes of retrieving

and/or sending files. There are many Internet sites that have established publicly

accessible repositories of material that can be obtained using FTP, by logging in using the

account name ‘anonymous’, thus these sites are called ‘anonymous ftp servers’. FTP was

invented and in wide use long before the advent of the World Wide Web and originally

was always used from a text-only interface.

E-mail – Messages sent through an electronic network to specified groups or individuals.

Though e-mail is general text, users can attach files that include graphics, sounds, and

video. E-mail is not ‘real time’ – relying on the recipient to open the e-mail to read it.

Emoticon - A symbol that uses the characters on a computer keyboard to convey emotion

or tone in an electronic message, such as the sideways smiley face. :-)

Home Page (or Homepage) - Several meanings. Originally, the web page that your

browser is set to use when it starts up. The more common meaning refers to the main

web page for a business, organization, or person or simply the main page out of a

collection of web pages, e.g., ‘Check out so-and-so's new Home Page.’

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HTML - Hypertext Markup Language is the authoring software language used on the

Internet's World Wide Web. HTML is used for creating World Wide Web pages.

Instant messaging - Like a chat room, IM is used to send messages back and forth

through the Internet to a specific user. It is like a chat room in the way that you can

communicate, but unlike a chat room, unless in a private chat, the information that is

being typed is sent directly to the user and is not viewed by anyone else.

Internet (Upper case I) - The vast collection of inter-connected networks that are

connected using the TCP/IP protocols and that evolved from the ARPANET of the late

60's and early 70's. The Internet connects tens of thousands of independent networks into

a vast global Internet and is probably the largest Wide Area Network in the world.

Intranet - A private network inside a company or organization that uses the same kinds

of software that you would find on the public Internet, but that is only for internal use.

Compare with extranet.

ISP (Internet Service Provider) - An institution that provides access to the Internet in

some form, usually for money.

IT (Information Technology) - A very general term referring to the entire field of

Information Technology - anything from computer hardware to programming to network

management. Most medium and large-size companies have IT departments.

Listserv - Mailing list program for communicating with other people who have

subscribed to the same list. Using e-mail, you can participate in listservs pertaining to

your topics of interest. When you submit a message to the server, your message is

relayed to all those on the listserv. You receive messages from other participants via e-

mail. It is similar to computer conferencing, but a listserv is asynchronous. Examples of

a modern Listserv would be Yahoo! Groups.

Logic model – Tool used to visually describe the linkages between program goals,

activities, and expected outcomes.

act of connecting to a computer system by giving your credentials (usually your

‘username’ and ‘password’).

JavaScript - JavaScript is a programming language that is mostly used in web pages,

usually to add features that make the web page more interactive.

Maillist (or Mailing List) - Usually an automated system that allows people to send e-

mail to one address, whereupon their message is copied and sent to all of the other

subscribers to the mail list.

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Modem (MOdulator, DEModulator) - A device that connects a computer to a phone

line.

Newsgroup - The name for discussion groups on USENET.

Password - A code used to gain access (login) to a locked system.

Podcasting or pod-casting - A form of audio broadcasting using the Internet, podcasting

takes its name from a combination of ‘iPod’ and broadcasting.

RSS (Rich Site Summary or RDF Site Summary or Real Simple Syndication) - A

commonly used protocol for syndication and sharing of content originally developed to

facilitate the syndication of news articles, now widely used to share the contents of blogs.

There are RSS ‘feeds’ that are sources of RSS information about web sites, and RSS

‘readers’ that read RSS feeds and display their content to users. RSS is being overtaken

by a newer, more complex protocol called Atom.

Server - A computer, or a software package, that provides a specific kind of service to

client software running on other computers.

Screen names - A screen name is the name a member of a website would use to

represent himself online. Screen names may relay some general information about the

user.

Spyware - A somewhat vague term generally referring to software that is secretly

installed on a user’s computer and that monitors use of the computer in some way

without the user’s knowledge or consent.

Hook up sites - These are websites that specialize in facilitating the connection of

likeminded people. Sites that are referred to as hookup sites are sites that are created to

help people find others with the same sexual desires and intentions. Hook up sites can

provide services to a generalized population, such as the MSM community, or to a

segment of the population, such as a bare backing site, or a site that caters to a particular

fetish.

Social Networking Sites (SNS) - A social networking site is a website that connects

individuals using various tools and features that assist in the connecting of individuals

who share similar interests. Social networking sites provide features and tools that help

to indicate the ways in which members of the site are connected, through various social

familiarities ranging from casual acquaintance to close familial bonds.

Upload - Transferring data (usually a file) from the computer you are using to another

computer. It is the opposite of download.

URL (Uniform Resource Locator) - An acronym for ‘Uniform Resource Locator,’ this

is the address of a resource on the Internet. World Wide Web URLs begin with http://

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USENET - A world-wide system of discussion groups, with comments passed among

hundreds of thousands of machines. Not all USENET machines are on the Internet.

USENET is completely decentralized, with over 10,000 discussion areas, called

newsgroups.

Web page - A document designed for viewing in a web browser and typically written in

HTML. A website is made of one or more web pages.

Web browser - A software application (either text-based or graphical) that lets you

browse the World Wide Web (WWW). Examples are: Firefox, Netscape Navigator, and

Microsoft Internet Explorer.

Website - The entire collection of web pages and other information (such as images,

sound, and video files, etc.) that are made available through what appears to users as a

single web server. Typically all of the pages in a website share the same basic URL.

Wi-Fi (Wireless Fidelity) - A popular term for a form of wireless data communication;

basically Wi-Fi is ‘Wireless Ethernet’.

XML (eXtensible Markup Language) - A widely used system for defining data

formats. XML provides a very rich system to define complex documents and data

structures such as invoices, molecular data, news feeds, glossaries, inventory

descriptions, real estate properties, etc. As long as a programmer has the XML definition

for a collection of data (often called a ‘schema’), they can create a program to reliably

process any data formatted according to those rules.

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Appendix A

Confidentiality Agreement Example #1 – Howard Brown Health Center