Methods and Emerging Strategies to
Engage People with Lived Experience
Improving Federal Research, Policy,
and Practice
Ofce of the Assistant Secretary for Planning and Evaluation
U.S. Department of Health and Human Services
December 20, 2021
Page1 |
Authors
Syreeta Skelton-Wilson, Ph.D.
Madison Sandoval-Lunn, B.S.
Xiaodong Zhang, Ph.D.
Francesca Stern, B.S.
Jessica Kendall, J.D.
About This Document
This document was produced pursuant to a contract between the Ofce of the
Assistant Secretary for Planning and Evaluation (ASPE) within the U.S. Department
of Health and Human Services and ICF (Contract Number HHSP233201500071I).
ICF | 9300 Lee Highway | Fairfax, Virginia 22031-1207 | www.icf.com
This document was commissioned as an independent study by ASPE. Views expressed in
the document do not necessarily reflect the official viewpoints of the agency or its staff.
Links and references to information from non-governmental organizations are provided for
informational purposes and are not an HHS endorsement, recommendation, or preference
for the non-governmental organizations. This document is in the public domain.
Authorization to reproduce it in whole or in part is granted. This document has been
formatted to be readable by assistive technologies, in accordance with section 508
regulations.
Acknowledgements
The authors wish to acknowledge the strategic vision and guidance from ASPE—in
particular Laura Erickson, Alec Vandenberg, Matthew Cournoyer, and Amanda Benton—for
bringing this brief to fruition.
Special thanks to the following 11 lived experience expert consultants for their knowledge,
leadership, and commitment to this important work: Andy Arias, Dwayne Betts, Jha’asryel-
Akuguil Bishop, Mitch Cherness, Lacy Dicharry, Tanya Gould, Lori Jump, Christina Love, Ima
Matul, Faith Slater-Davis, and Lupe Finckward.
Our gratitude also goes to 12 federal staff and nine nonfederal individuals with lived
experience from 11 initiatives who shared with us their experiences, perspectives, and
resources, which informed much of content in this brief.
Methods and Emerging Strategies to Engage People With Lived Experience | December 2021
Page2 |
Overview of Findings
This brief identies lessons learned and key
considerations from a range of methods for
engaging individuals with lived experience to
improve federal research, policy, and practice.
The ndings are based on a comprehensive envi-
ronmental scan, key informant discussions, and
consultations with lived experience experts.
Reported impacts of engagement: Key infor-
mants shared anecdotal evidence that engaging
people with lived experience has helped improve
the outcomes and impacts of federal systems, pro-
grams, and initiatives. They also reported benets
for both individuals with lived experience and for
individual federal staff, including increased under-
standing of the needs of the people they serve.
Approaches for effective engagement: While
individual federal leaders and staff have varying
degrees of control over important engagement
considerations, agencies, their staff, and partners
may wish to consider the following strategies:
¡Dene clear expectations, roles, and
limitations of engagement through policies
and operating procedures and, where possible,
set internal policies that require the engage-
ment of people with lived experience.
¡Build in enough time to allow space for people
with lived experience and staff to engage
meaningfully.
¡Allocate federal resources to equitably
compensate people with lived experience
commensurate with their role in the engage-
ment. Provide logistical support and dedicated
staff to support implementation of lived
experience engagement activities.
¡Ensure the engagement is person and healing
centered, trauma and survivor informed,
respectful of varied personal histories, and
transformational rather than transactional.
¡Start with equity as a goal and expectation
when planning to proactively ensure historically
excluded populations can meaningfully partic-
ipate in opportunities to lend lived experience
expertise.
¡Recognize and examine disparities in
power that exist among federal staff, their
partners, and individuals with lived experience.
Work collaboratively to share power by ensuring
individuals with lived experience not only have
a seat at the table but also can meaningfully
contribute to decision-making throughout the
full program lifecycle.
¡Avoid the risks of exploiting and/or tokenizing lived experience by ensuring thoughtful,
intentional, inclusive, and purposeful engagement with federal agencies.
¡Involve people with lived experience throughout the entire decision-making
process, including at the conceptualization, implementation, and evaluation levels
to the fullest extent possible.
What Is Lived Experience?
Lived experience in the context of
this study is “representation and
understanding of an individual’s
human experiences, choices, and
options and how those factors
inuence one’s perception of
knowledge”
1
based on one’s own
life. Lived experience provides
insight into patterns, common
behaviors, challenges, and barriers
among individuals who share
similar experiences.
Roles for Individuals with
Lived Experience in Federal
Initiatives
■ Storytellers
■ Advisors
■ Grantees
■ Partners
■ Staff
Effective Engagement
Strategies for Federal Agencies
to Use
■ Prepare and plan for engagement
¡Consider the duration of the
engagement
¡Dedicate sufcient resources,
including compensation
¡Ensure exibility and
accommodation
¡Provide ongoing training and
support for collaboration and
bidirectional learning
¡Create supportive policies,
procedures, and protocols
¡Conduct continuous quality
improvement
¡Integrate people with lived
experience into the agency
workforce
Federal Agency Conditions for
Greatest Success
¡Prior experience with
engagement
¡Committed leadership
1
Given, L. M. (Ed.). (2008). The SAGE encyclopedia of qualitative research methods (Vol. 2). SAGE Publications. https://dx.doi.org/10.4135/9781412963909
Methods and Emerging Strategies to Engage People With Lived Experience | December 2021
Page3 |
Introduction
This brief identies lessons learned and
experiences of federal initiatives that
engage youth, young adults, and adults
with lived experience to improve federal
research, policy, and practice. By
illuminating how federal agencies have
engaged individuals with lived experi-
ence and the reported impacts of such
engagement, we hope to provide feder-
al leaders and partners with emerging
models, practices, and considerations
that agencies can use to effectively
engage people with lived experience
across a broad array of human
services initiatives.
In the context of federal agencies, lived
experience helps to develop a deeper
understanding of the conditions affect-
ing certain populations, the solutions
that are most appropriate for those
impacted by the issue, and the poten-
tial harmful unintended consequences
of the current and past actions taken
by the existing system on the people it
aims to serve. This brief uses the term
“lived experience” broadly to describe
many different human services areas
and experience, but people may prefer
different terminology depending on
programmatic context and personal
preference.
Engaging people with lived experience
represents one key way that federal
agencies gather important information, shape programming and policy, and help improve
outcomes for those served. Other information gathering methods include listening sessions,
requests for information, and other methods of research and seeking feedback from pro-
gram constituents, as well as other research methods such as analyses of program records
and survey data, and formal program evaluation—all of which may be enhanced by includ-
ing people with lived experience. In particular, insights informed by lived experience can
help highlight the following:
• Patterns, common behaviors, challenges, and barriers among individuals who
share similar experiences.
• Changes in the context surrounding social issues of interest over time.
• Intersections and interdependencies among participatory practices and democratic and
empowerment program design and evaluation in each stage of a program’s lifecycle.
• Ways to effectively support individual behavioral and practice changes among federal
staff and individuals with lived experience.
• Improvements to services and programs yielded by teaching agency staff
and decision-makers about the priority population and its needs and facilitating the
application of those learnings.
Lived experience is dened here as “repre-
sentation and understanding of an individual’s
human experiences, choices, and options and
how those factors inuence one’s perception
of knowledge”
2
based on one’s own life. People
with lived experience in the context of this re-
search is dened as individuals directly impact-
ed by a social issue or combination of issues
who share similar experiences or backgrounds
and can bring the insights of their experience
to inform and enhance systems, research,
policies, practices, and programs that aim to
address the issue or issues.
This brief uses lived experience as an umbrel-
la term encompassing many different human
services areas and experiences, but context is
important when defining lived experience. Spe-
cific definitions differ by sector, and it is im-
portant for different human services systems
that partner with people with lived experience
to refine their terminology in collaboration with
program participants and constituents. For
example, lived experience may carry different
connotations in the mental health context than
in the child welfare system, and in some cases
other terms may be preferred. It is important
to ask people how they want their experience
reflected as part of an engagement, particular-
ly since the term may be stigmatizing in some
cases when used as a label. For example,
labeling someone as a person who uses sub-
stances may unintentionally cause stigma, or a
parent with child welfare involvement may pre-
fer to be referred to as simply a parent rather
than a parent with child welfare involvement.
Dening Lived Experience
2
Given, L. M. (Ed.). (2008). The SAGE encyclopedia of qualitative research methods (Vol. 2). SAGE Publications. https://dx.doi.org/10.4135/9781412963909
Methods and Emerging Strategies to Engage People With Lived Experience | December 2021
Page4 |
While the Federal Government’s history of engaging individuals with lived experience
to contextualize and inform policy and practice dates to the early 20th century
3
, there
is growing interest in rening, improving, and expanding these kinds of engagements,
particularly among health and human services programs.
4
The information compiled in this
brief reects the knowledge, experiences, and insights that individuals with lived experience
have been promoting for decades. The brief aims to connect these learnings to the Feder-
al Government’s efforts to advance equity and to contribute to the set of tools available to
federal staff by offering examples of common models and strategies used across a sample
of agencies and program areas.
Despite general expectations and anecdotes that engaging individuals with lived experience
is valuable, limited research exists documenting the impact of this engagement on out-
comes of federal programs and initiatives. The U.S. Department of Health and Human
Services (HHS) is interested in empirical evidence on the effectiveness of engaging and
learning from individuals who have lived experience across the human services eld,
including experiences such as substance use, community member returning from incar-
ceration, homelessness, domestic violence, human trafcking, poverty, disabilities, and
family caregiving. This brief is a rst step in synthesizing the collective knowledge. Our
research highlights an opportunity to improve engagement practices so that people with
lived experience and federal agencies can work together to achieve structural and systems
changes that can further improve outcomes for individuals, families, and communities which
federal agencies seek to serve.
Data from an environmental scan of federal engagement initiatives, key informant
discussions, and consultations with lived experience experts shed light on important themes
about the methods for and benets of engaging people with lived experience. For the
environmental scan, the research team systematically reviewed the literature on 27 federal
initiatives across seven agencies. This research helped identify key informants, including
12 federal staff members and nine nonfederal individuals with lived experience, across 11
federal initiatives. (See exhibit 1 for a list of the initiatives.)
In addition to the environmental scan and key informant discussions, the extensive and
active engagement of 11 consultants with expertise on lived experience engagement is
an important aspect of the study. Representing a range of races, ethnicities, nationalities,
sexual orientations, gender identities, and abilities, the experts each have lived experi-
ence in one or more human services areas and have participated in some capacity in prior
federal initiatives that engaged individuals with lived experience. These experts informed
the work plan; identied programs and initiatives for the environmental scan; suggested
content for this brief; and, most importantly, ensured the methods of engagement identi-
ed were grounded in lessons learned from past experiences to effectively, meaningfully,
and respectfully engage individuals with lived experience.
3
Duke, E. (1912). Infant mortality: Results of a eld study in Johnstown, PA, based on births in one calendar year. U.S. Department of Health and Human
Services, Administration for Children and Families, Children’s Bureau. https://archive.org/details/infantmortalityr00duke
4
Ellis, C., & Flaherty, M. (1992). Investigating subjectivity: Research on lived experience. SAGE Publications.
Methods and Emerging Strategies to Engage People With Lived Experience | December 2021
Page5 |
Exhibit 1. Federal Initiatives Involving Individuals with Lived Experience Included
in This Study
Agency Initiative
HHS/Administration for Children and
Families (ACF), Children’s Bureau
Capacity Building Center for States
National Youth in Transition Database Reviewers
HHS/ACF/Ofce of Head Start
Ofce of Head Start (general approach to partnering
with families, rather than a specic initiative)
HHS/Administration for Community Living
Americans With Disabilities Act Participatory Action
Research Consortium
RAISE Family Caregiving Advisory Council
HHS/Ofce of the Assistant Secretary for
Planning and Evaluation
Interagency Working Group on Youth Programs
HHS/Substance Abuse and Mental Health
Services Administration
National Center for Trauma-Informed Care and Sui-
cide Attempt Survivors Task Force (currently known
as the Interagency Task Force on Trauma-Informed
Care)
U.S. Department of Housing and Urban
Development
Youth Homelessness Demonstration Program
U.S. Department of the Interior and U.S.
Department of Justice (DOJ)
Presidential Task Force on Missing and Murdered
American Indians and Alaska Natives (Operation Lady
Justice)
DOJ/Ofce of Justice Programs
National Reentry Resource Center’s Face to Face
Initiative
U.S. Department of State/Ofce to Monitor
and Combat Trafcking in Persons
Human Trafcking Expert Consultant Network
Why Engage People with Lived Experience?
Data suggest that engaging people with lived experience yields benets or impacts
at multiple levels: individual, program/initiative, and agency. Importantly, the impact
referenced here is the “perceived impact” noted in the available literature and by our
project’s key informants—federal staff and/or people with lived experience who were
engaged by federal initiatives—rather than the impact uncovered using experimental
or quasi-experimental studies.
For me I think it opens your eyes that when you’re reading...and having a much
clearer, better, richer understanding of what people in reentry [to the community from
incarceration] need and what it takes to create services that meet their needs…you
write a better product that’s more accessible, more responsive. You’re crafting perfor-
mance measures that your grantees have a better sense of collecting. You understand
what success looks like. You’re designing training and TA that is more responsive to
help federal grantees that are out in the eld actually engage with people.
— FEDERAL STAFF
Methods and Emerging Strategies to Engage People With Lived Experience | December 2021
Page6 |
The following represent bene
ts at three different levels noted by our project’s key
informants and in the literature: the individual (both for federal staff and people with lived
experience), program and initiative, and agency levels.
¡Benefits for individuals. Federal staff noted they gained an improved awareness and
knowledge about the strengths, needs, challenges, and systemic barriers experienced
by the prioritized communities they served,
and they further developed professional skills
to reach and engage individuals in these
communities. Individuals with lived expe-
rience who engaged with federal initiatives
noted benets such as increased self-efcacy
and empowerment, strengthened communi-
ty connectedness and social and emotional
support, and a better understanding of federal
programs and agencies.
¡Benets for programs and initiatives.
Some initiatives, especially those involving
legislatively mandated advisory groups or
research commissions, reported benets such
as an improved ability to deliver responsive
services, programming, training, and techni-
cal assistance. Informants noted that making
advisory groups more representative of the
priority populations strengthened products,
tools, and resources by making them more
accessible, responsive, and tailored to the
specic needs of the priority populations.
Finally, the environmental scan showed that
lived experience engagements within initia-
tives reviewed had resulted in improved rep-
resentation in and increased priority commu-
nities’ inuence on decision-making processes
and practices.
¡Benets for agencies. By informing fed-
eral agencywide strategies and decisions,
engagement of people with lived experience
has contributed to new or improved federal
policies and practices. These improvements
included directing funding and resources
toward the concerns and needs of the priority
communities and enhancing service and deliv-
ery infrastructure, including mechanisms for
ongoing and sustained engagement of lived
experience experts. Engagement also created
informed and empowered groups of advocates
who have extensive networks and who have
the skills to speak directly to agencies and de-
cision-makers about the needs of the priority
populations they represent.
Though these are all important impacts, our research did not identify substantive impacts
at the system level, though this may be due to a lack of data rather than a lack of impact
on systems. This highlights an opportunity to collaboratively expand and improve the
ways federal agencies engage people with lived experience in order to co-design structural
changes that can further improve outcomes for individuals, families, and communities that
federal agencies seek to serve.
Achieving Federal Practice
Changes Through Lived
Experience Stafng
The Face to Face Initiative focuses
on prison and sentencing reform
by disseminating stories about the
impacts of incarceration on indi-
viduals and families. It has helped
inform and educate federal staff
and executive-level state, local,
and tribal leadership about these
impacts. This information has
helped shape the ways these lead-
ers interpret legislation and design
and administer federally funded
programs. For example, one juris-
diction, in response to the engage-
ment, conceived of and executed
new state-level grants, formed a
reentry council, and developed
a reentry plan to coordinate and
enhance services. As a result of
being better informed about the
human toll of incarceration on
inmates and their families, federal
staff feel they have strengthened
the products they developed by
improving their accessibility and
responsiveness to the priority pop-
ulation and tailoring them to the
population’s specic needs. The
initiative also led to development
of a fellowship for a person with a
criminal record to guide and inform
the implementation reentry and
reintegration programs.
Initiative Highlight:
Face to Face Initiative
Methods and Emerging Strategies to Engage People With Lived Experience | December 2021
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How Agencies Engage People with Lived Experience
Federal agencies have employed various models to engage individuals with lived experience.
Lived experience models varied by the following characteristics:
¡Roles: The functions performed by individuals with lived experience
¡Activities: The actions individuals and agencies performed as part of live
experience engagements
¡Emerging Strategies: The approaches agencies took that could be adjusted and tailored
for the specic implementation setting and context, and that seemed to ensure the greatest
likelihood of success
¡Facilitators: The conditions that existed within agencies that were often outside of staff
control but which seemed to contribute to engagements’ success
The logic model in exhibit 2 depicts the integral inputs, activities, outcomes, and impacts found
across various lived experience engagement initiatives, as well as the mediating factors.
Exhibit 2. Logic Model of Lived Experience Engagement Initiatives
Individuals with
Lived Experience:
Knowledge, skills,
abilities, and expertise
among individuals with
lived experience
serving federal agen-
cies in the following or
other roles:
■
Storytellers
■ Advisors
■ Grantees
■ Partners
■ Staff
Federal Agencies:
Funding, stafng,
agency infrastructure,
and other resources
supporting the lived
experience initiative
Inputs Activities Outcomes Impact
Individuals with
Lived Experience:
■ Research
■ Program evaluation
■ Consultation
■ Service and
program delivery
■
Communications
■ Policymaking and
policy analysis
Federal Agencies:
■
Workforce
development to be
trauma-informed
and inclusive
■
Lived experience
engagement
planning and
preparation
■
Dedication of
resources to support
lived experience
engagement
■
Development of
policies, proce-
dures, and protocols
to support the
engagement of
individuals with
lived experience
Individual Level Among Individuals with Lived
Experience
■ Development of professional and leadership skills,
knowledge, and expertise
■
Increased self-efcacy, agency, and empowerment
■ Strengthened community connectedness and social
and emotional supports
■ Increased understanding of role of the federal
programs and agencies
■
Improved insight into
patterns, common
behaviors, unique
challenges, and
barriers among
individuals who share
similar experiences
■
Deeper understanding
of social issues
■
Improved program
alignment with
participatory practices
and equitable
program design and
evaluation
■
Improved quality
of services and
programs
■
Expanded
understanding of the
target population and
its needs
■
Improved
effectiveness of
practices used by
federal staff
■
Greater support
for demonstrated
individual behaviors
among the popula-
tions served
Individual Level Among Individuals with Lived
Experience
■
Improved awareness and knowledge of the strengths,
needs, challenges, and systemic barriers experienced by
the prioritized community
■ Enhanced cultural and linguistic awareness
■ Improved professional skills to engage and reach
individuals within targeted communities
Program and Initiative Level
■
Improved ability to deliver responsive and equitable
services, programming, training, and technical assistance
■ Improved representation and inuence among prioritized
communities in decision-making processes, practices, and
other social actions
■ Improved dissemination and access to program and
initiative tools, products, and resources
Agency Level
■
Better informed and more empowered groups of advocates
with skills and access to inuence decision-makers about
agency strategies
■ Improved policies and practices, that direct funding and
other resources towards the priorities and needs of
target communities
■ Enhanced service and program delivery infrastructure,
including mechanisms for ongoing and sustained
engagement of individuals with lived experience
■ Increased awareness of and improved prioritization and
responsiveness to pressing issues among communities
of focus
The level present of the following inputs may mediate the extent to which activities are implemented successfully
and the outcomes are achieved:
Level of federal agency inputs
t Prior experience with engagement t Duration of engagement t Flexibility and diversity of engagement
opportunities t Committed leadership t Ongoing training and support for individuals with lived experience engaged
Methods and Emerging Strategies to Engage People With Lived Experience | December 2021
Page8 |
Roles That Individuals with Lived Experience Play
Lived experience perspectives were leveraged and incorporated into federal research, pol-
icymaking, and practice in multiple ways, including through the engagement of individuals
with lived experience as (1) storytellers, (2) advisors, (3) grantees, (4) partners, and (5)
staff (exhibit 3). These roles are roughly ordered by ascending level of engagement in-
volved. Storytellers had the most limited involvement, making it an optimal role for use
by newer programs to begin to engage people with lived experience. This was the most
common role used among agencies to engage those with lived experience. However, many
agencies moved beyond storytelling on its own. Agencies that had a deeper and more
sustained investment in incorporating individuals with lived experience as a key practice
to improving their services and outcomes combined storytelling with other roles to inform
their work. The role of being on staff often had the most involvement and required higher
levels of agency support. The appendix includes more details about these roles, including
descriptions, benets, situations where they are appropriate in future work, limitations, and
other considerations.
Lived experience experts commonly served as advisors, often through groups,
committees, and boards, for initiatives that develop national strategies, congressional
reports, policy recommendations, and capacity-building efforts.
Grantees used federal agency funding to engage or represent individuals with lived
experience to inform the design and implementation of their work as a primary means
to make policy and practice improvements in states and local communities.
Partners were engaged to provide training, technical assistance, and consultation and
to develop materials to support initiatives, such as guidance, model policies, position
papers, and white papers. While they made similar contributions to staff, partners
were external to the federal agencies. Unlike advisors, who were typically individuals
who worked with agencies, partners were typically organizations comprised of individ-
uals with lived experience that collaborated with federal agencies and connected them
to communities.
Storytellers
Initiatives engaged individuals with lived experience by creating opportunities for
storytelling, including listening sessions, public testimony, interviews, focus groups,
and digital formats (e.g., videos). Storytelling may hold important cultural signif-
icance for some priority populations and highlight the differences that some groups
experience with different government systems.
Advisors
Grantees
Partners
Staff
Many federal agencies’ staff included people with lived experience who brought
valuable expertise and perspective to their work. Some of these staff were
purposefully hired because of their relevant background, and others brought
relevant lived experience although this was not a requirement or consideration for
the job. These staff were involved in all aspects of federal work, according to their
role/position, including training, grant monitoring, ongoing consultation, coordination
of discrete projects, and mentoring and coaching other staff on working with and
collaborating with individuals with lived experience.
Exhibit 3. Roles for Individuals with Lived Expertise in Federal Initiatives
Methods and Emerging Strategies to Engage People With Lived Experience | December 2021
Page9 |
Exhibit 4 shows that all roles used by initiatives we examined featured varying degrees of
shared power, authority, and responsibility among the individuals with lived experience and
the federal agencies engaging them, as well as varying timeframes, levels of participation,
and types of engagement activities. People with lived experience may have played multiple
roles, particularly in agencies where their work was more embedded and routinized as a
regular practice.
Activities Undertaken by Individuals with Lived Experience
Agencies that prioritized meaningful engagement and the integration of lived experience
in their work created opportunities
for experts to exercise and share
decision-making power.
Individuals contributed their lived
experience through the follow-
ing general activity areas—as well
as specic tasks that occurred to
achieve those activities—in the
initiatives we reviewed:
¡Research and program
evaluation. Individuals with
lived experience helped
agencies conduct, contextualize,
translate, disseminate, and foster the adoption of research and program evaluation
ndings to inform policy and practice. This work has extended beyond only serving as
subjects of research or participating in listening session to more complex activities, such
as conducting peer or grant reviews, recruiting participants, or actively designing and
leading research.
¡Consultation. Individuals with lived experience made recommendations to policymak-
ers, planning agencies, and executive-level government ofcials at the federal, state,
and local levels. Recommendations may have been related to funding allocation, devel-
oping strategic partnerships, program planning and implementation, service delivery,
training, future evaluation, and research. In some cases, people with lived experience
may have directly impacted decision-making and policy development.
¡Service and program delivery. Individuals with lived experience provided direct
services and delivered strength-based, trauma-informed support, services, and pro-
grams grounded in shared and common experiences as outreach workers, case man-
agers, paraprofessionals, recovery specialists and coaches, and peer support specialists
through consumer- and peer-operated programs and services. People with lived experi-
ence also provided technical assistance about service and program delivery.
¡Strategic communications. Individuals with lived experience helped directly commu-
nicate with and create strategic communications tailored to federal staff, priority popu-
lations, and other program constituents about the practices, goals, and requirements for
effective service and program delivery for prioritized populations.
Typical engagements involved two or more tasks, which could be associated with any of
the activities. Tasks related to policy development, listening sessions or public testimony or
comment, advisory, and advocacy were the most mentioned.
Storyteller
Advisor Grantee Partner Staff
Exhibit 4. Roles for Individuals with Lived
Experience in Federal Initiatives
Roles exist along a continuum of increasing levels of
shared power, authority, and responsibility.
Methods and Emerging Strategies to Engage People With Lived Experience | December 2021
Page10 |
Generally, the study found that programs that used fewer methods and involved fewer
tasks increased the potential of exposing individuals with lived experience—including federal
staff—to unintended adversity and/or secondary trauma. For example, these engagements
tended to rely more heavily on sharing stories and testimonials from personal lived expe-
rience. While storytelling can be important, when not navigated carefully can have little
impact on decision making or cause individuals to relive traumatic experiences or trigger the
negative effects of adverse events. However, storytelling can still be a bridge to increased
inclusiveness and diversity of people with cultural, ethnic, intersectional, and cross sectional
identities that are unique and underrepresented in the federal government structure.
The activities and tasks people with
lived experience conducted tended to
differ depending on the
initiative’s focus:
¡Initiatives that focused on improving
professional practices for both fed-
eral staff and individuals with lived
experience—including grant making,
training, technical assistance, stra-
tegic communications, evaluation,
research, and continuous program
improvement tasks—often used
multicomponent initiatives (i.e.,
involving several roles and activities
for engaging individuals with lived
experience). These initiatives often
featured the sustained engage-
ment of lived experience experts
who provided feedback and rec-
ommendations to improve agency
effectiveness and priority population
outcomes.
¡Initiatives that involve policymaking
activities and tasks (e.g., develop-
ing sample policy language, white
papers, or briefs) or limited-term
research projects ranged from one-
time engagements to more lengthy
engagements where the specic
roles and activities (typically with
people with lived experience en-
gaged as advisors, partners, and/or
staff) were more dened and tied to
specic timelines and deliverables.
¡Research initiatives engaging people
with lived experience as advisors,
grantees, partners, and staff often
required more experience and effort
among agencies to identify, recruit,
and train individuals with lived ex-
perience who possess specic and
professionalized skills needed to
design, implement, and conduct re-
search activities and tasks. Similarly, policymaking initiatives required more interagency
coordination, particularly if the governing policy was executed outside of the lead agency.
There are many ways to integrate perspectives
from people with lived experience in federal re-
search, programming, and policymaking. While
methods such as surveying program partici-
pants or asking people with lived experience to
speak at events can be important, meaningful
engagement is intentional and ideally provides
opportunities for people with lived experi-
ence to substantively impact decision-making
and outcomes. Extensive strategies to ensure
meaningful engagement are discussed below,
and while there is no one single approach,
meaningful engagement often features the
following conditions:
• Programs involve people with lived expe-
rience from the beginning of the engage-
ment (e.g., formulating research questions,
identifying programmatic or policy goals)
and provide opportunities to partner with
federal staff, rather than only soliciting mi-
nor input after work is nearly complete.
• Federal staff and leadership are genuinely
open to perspectives and insight that peo-
ple with lived experience offer, instead of
simply trying to “check the box.” Although
agencies may face limitations in acting on
all input, those agencies seeking to mean-
ingfully engage people strive to act on rec-
ommendations shared and provide trans-
parency when that is not possible. People
with lived experience also feel confident
that their perspectives are not only re-
spected and valued, but also that agencies
do their best to act on their input.
• Agencies compensate people with lived
experience for their contributions at a level
that is at least commensurate with com-
pensation provided to other experts.
What is meaningful
engagement?
Methods and Emerging Strategies to Engage People With Lived Experience | December 2021
Page11 |
Emerging Strategies Agencies Used to Ensure Meaningful Engagement
Federal agencies employed multiple strategies to integrate the input of individuals with lived
experience and to support and sustain their engagement:
¡Preparing and planning for engagement. Federal agencies and staff who prepared
and planned for engaging individuals with lived experience were able to ensure they could
offer the coaching, mentorship, and training needed to help them engage lived experience
experts successfully. These tasks also may have better equipped federal staff and part-
ners with the skills to offer mutually benecial engagement and sustain inclusion of lived
experience as a routine aspect of federal programs. Identifying and recruiting a range of
individuals with diverse lived experience represents an important part of planning. Seeking
varied perspectives and types of expertise helps prevent relying repeatedly on the same
individual(s). Additionally, during the planning and preparation phases of the work, agen-
cies could consult with other federal and state agency staff and partners with experience
working with individuals with lived experience to gain insight about successfully designing
and executing an engagement.
¡Considering the duration of engagement.
Some agencies engaged lived experience ex-
perts in a single activity at a single point in time
(e.g., listening sessions, public testimonies, grant
reviews), and others more deeply immersed
experts in several activities sustained over an
extended period (e.g., technical assistance
provision, training, advising, consulting). Both
approaches had benets. Single point-in-time ap-
proaches seemed to allow agencies more exibil-
ity to engage larger numbers of people with lived
experience and to gather more rapid and timely
feedback, but it limited the number of areas and
ways that the individuals could provide input.
More immersive approaches seemed to require
a more dedicated and sustained investment of
time and resources to engage a small, discrete
number of individuals with lived experience, but
they allowed for individuals with lived experience
to contribute more holistically to solutions around
more complex issues.
¡Dedicating sufcient resources, including
compensation.
5
Agencies needed dedicated
time, information, and nancial and human
resources to make engagement feasible and
effective. These resources were critical to sup-
porting proactive outreach and recruitment, the
coordination of engagement opportunities, and
ongoing follow-up needed to support sustained
lived experience engagement. In addition, these
resources helped ensure lived experience experts
received equitable nancial compensation for
their role and level of expertise. Providing them
with compensation commensurate with the rates
that other experts—i.e., experts engaged based
on their expertise as practitioners or researchers, rather than lived experience—receive
helped recognize the valuable and unique expertise that people with lived experience lend,
which promoted meaningful engagement. In addition to nancial compensation via direct
hourly payment, stipends, or honoraria, agencies also considered providing other ben-
ets and resources to lived experience experts to facilitate their engagement, including
incentives; grants; child care; mental health services; and funding for travel, conference
participation, and continuing education. Lived experience expert informants noted sever-
al critical benets to receiving direct compensation, including increased opportunities for
professional development and skill attainment, networking access, and nancial support.
Enhancing Communications
by Engaging Youth and
Young Adults
The Interagency Working Group on
Youth Programs (IWGYP) is com-
posed of representatives from 22
federal departments and agencies
that support programs and services
focused on youth (ages 10 to 24).
Created through an Executive order,
the IWGYP facilitates coordination
and collaboration, disseminates evi-
dence-based information, and manag-
es a cross-cutting federal website on
youth issues
(https://youth.gov) that has web
content targeted to adults who work
with youth, and youth themselves
(Youth Engaged 4 Change; https://
engage.youth.gov). It also maintains a
presence on social media (Instagram,
Facebook, and Twitter). The IWGYP
also models youth-adult partnership
by engaging youth in the planning and
facilitation of federal meetings, which
has resulted in video vignettes, tip
sheets, and other digital content for
youth and adults.
Initiative Highlight:
Interagency Working Group
on Youth Programs
5
Grant recipients must check with the funding agency before using federal dollars for this purpose.
Methods and Emerging Strategies to Engage People With Lived Experience | December 2021
Page12 |
In addition, they discussed the unin-
tended consequences that can occur
when lived experience engagements
have scarce resources and experts
are undercompensated, which can
undermine, disregard, and/or mar-
ginalize people with
lived experience.
¡Ensuring exibility and
accommodation. Lived experi-
ence engagements—particularly
those that were long-term, ongoing
efforts—seemed to be most suc-
cessful when agencies were exible
and accommodating when working
with the lived experience experts to
ensure equitable access to engage-
ment opportunities. For example,
some agencies required background
checks when hiring lived experience
experts, which may have prohibited
engaging individuals with certain
lived experiences who traditional-
ly lack access to opportunities to
have their voice heard by federal
agencies. Key informants noted that
agencies should determine wheth-
er the background checks are truly
necessary for the successful com-
pletion of the activity. In addition,
language, disabilities, travel costs,
business attire, technology require-
ments, scheduling conicts, and
child care needs were barriers or
challenges to engagement for some
individuals with lived experience,
and agencies should consider how to
proactively eliminate or reduce such
barriers.
¡Providing ongoing training and support. Providing ongoing assistance to individuals
with lived experience and federal staff helped them better understand how to imple-
ment a successful engagement initiative. Training and other forms of assistance helped
show individuals how to ensure engagement was strengths-based; minimize trauma and
adversity; incorporate cultural humility; and ensure the engagement did not perpetuate
inequities, exploitation, or disparities. For example, one initiative hosted a peer support
group for its lived experience experts and federal staff with lived experience to provide
support to one another in the workplace. In addition, agencies partnered with individ-
uals with lived experience to provide ongoing technical support to agency staff, there-
by guiding the direction and steps agencies took to plan lived experience engagement
frameworks. Types of training and support included peer supports for engaged people
with lived experience; forums for open, honest exchange; and training for federal staff
to enhance critical skills, such as active listening.
¡Creating supportive policies, procedures, and protocols. Internal policies that
mandated the engagement of individuals with lived experience—as well as relevant fed-
eral laws—helped reinforce and normalize this practice and provide strong justication
for agencies to devote resources to supporting lived experience engagements. Formal
written policies also helped establish lived expertise as a professional experience, create
requirements for lived experience in job descriptions, and ensure individuals were com-
pensated for sharing their expertise. Written procedures may have helped standardize
practices to ensure these engagements of people with lived experience were meaningful,
authentic, and intentional.
Individuals with lived experience reported that
initiatives with the following characteristics
were the most effective:
• Had the funding, staff, infrastructure,
and other resources to support engage-
ment activities and use lived experi-
ence perspectives and input
• Offered ongoing, diverse, and meaning-
ful opportunities for authentic and in-
tentional engagement throughout the
program lifecycle, from conceptualization
through implementation and evaluation
• Possessed some prior experience with
lived experience engagement that allowed
for the ongoing renement of engage-
ment approaches and activities and
the development of robust infrastructure to
support lived experience engagement
• Provided equitable compensation and other
incentives and resources to individuals with
lived experience
• Used written policies or procedures
to reinforce and sustain engagement
• Demonstrated sensitivity to culture,
adverse experiences, and trauma histories
and actively worked to mitigate second-
ary trauma exposure and make space for
healing (when needed and appropriate)
• Supported collaboration and bidirectional
learning between and among lived experi-
ence experts and federal staff
Conditions for Greatest
Effectiveness
Methods and Emerging Strategies to Engage People With Lived Experience | December 2021
Page13 |
¡Conducting continuous quality improvement. This was critical to sustaining lived
experience engagement efforts. By creating feedback loops to inform practice, including
seeking input from people with lived experience who were engaged with an initiative,
agencies learned and evolved strategies over time to support the engagements, allowing
them to be more effective and mutually benecial over time.
¡Integrating people with lived experience into the agency workforce. Employing
federal staff with lived experience can help embed lived experience perspectives into
federal work. Agencies have institutionalized the practice of engaging individuals with
lived experience in part by recruiting, hiring, and retaining diverse groups of individuals
with lived experience. Hiring individuals with diverse lived experience can help ensure
that agencies do not exclude perspectives of people who have historically been un-
derserved by federal programs and policies. This work also included providing support
through supervision, coaching, and mentoring. These agencies also sought to directly
engage these individuals in other capacities, including as grantees, interns, consultants,
contractors, and partners. These agencies often sought to create a workforce that in-
cluded people with lived experience and to train all federal staff to engage people with
lived experience as partners in their work. Some agencies did this by making lived ex-
perience a requirement for employment where possible, acknowledging the importance
of lived experience in job postings, or encouraging grantees to hire people with lived
experience. In doing so, federal agencies created a more inclusive and diverse workforce
with broader capabilities to dismantle structural inequities.
Facilitators That Contributed to Engagement Success
While federal staff had control over many of the activities and strategies previously dis-
cussed, there were some features that federal staff had less control over, including the level
of maturation of the initiative, its history of incorporating lived experience in its efforts, and
leadership directing such engagement methods and making decisions. Nonetheless, the
following conditions facilitated equitable and effective partnerships across initiatives:
¡Prior engagement experience. Our research shows that new initiatives tended to
offer more limited types of engagement opportunities than those that had a longer
history of successfully engaging individuals with lived experience. Initiatives with a
longer history of engaging individuals with lived experience tended to have had the
benet of more time to rene and enhance their strategies, activities, and methods for
engaging individuals with lived experience. However, this does not mean that lack of
prior experience is a reason not to engage people with lived experience; it reinforces the
importance of continually striving to improve engagement processes. Agencies may wish
to begin engaging people with lived experience where possible, with the expectation of
improving engagement practices over time by regularly seeking feedback from those
engaged. Our research highlights that initiatives learned to adapt and make improve-
ments to how they engaged individual with lived experience over time. Agencies that
are just starting out can also partner with federal ofces or other organizations that
have a longer history of engaging people with lived experience.
¡Committed leadership. Key informants noted that visible and tangible leader-
ship support was critical to initiatives’ success. Leadership support demonstrated to
constituents that engaging those with lived experience was an expected organization-
al norm, could help institutionalize the use of engagement models, and could ensure
lived experience informs organizational decisions. Leaders helped garner federal staff
and partner buy-in and support for these efforts by participating in lived experience
engagements, actively communicating the importance of the work, and articulating
agency aims and goals about engaging individuals with lived experience.
Methods and Emerging Strategies to Engage People With Lived Experience | December 2021
Page14 |
Lessons Learned and Implications
Key lessons emerged from the eld and through this study about how to improve federal
research, policymaking, and practice by engaging individuals with lived experience. Key
informants and experts with lived experience highlighted lessons related to infrastructure
and resource needs, equity and access, engagement practices, and policies and protocols
used to support agencies in their collaboration with individuals with lived experience. Al-
though some agencies and federal staff may not have full control or discretion over applying
some of these lessons, they can consider to what degree they can implement them to bet-
ter understand the needs and desired outcomes of the priority populations and communities
they serve.
Provide Appropriate Infrastructure and Resources
¡Prioritize dollars in federal budgets and/or appropriations to support the engagement of
people with lived experience.
¡Ensure equitable compensation and logistical support, as well as a dedicated staff or
oversight or advisory committees, that can support lived experience engagements.
¡Ensure the compensation reects the valuable expertise of individuals with lived experi-
ence and is commensurate with rates paid to other types of experts. In addition, offer a
range of benets to foster engagement, including nonmonetary benets such as profes-
sional development and relationship-building opportunities.
¡Train and prepare federal staff to meaningfully engage people with lived experience.
This support includes training federal staff to provide engagement opportunities that
are person and healing centered, strengths based, trauma and survivor informed, and
transformational rather than transactional.
Prioritize Equity and Access
¡Start with equity as an end goal when shaping all elements of engagement opportunities
by proactively ensuring historically excluded populations are able to participate mean-
ingfully. Strategize about ways to ensure equitable access to participating in opportuni-
ties to lend lived experience expertise.
¡Examine where disparities exist (e.g., routine equity audits) and intentionally recruit
lived experience experts who understand these disparities in order to better prioritize
underrepresented, underserved, and/or under-resourced populations.
¡Create culturally tailored and inclusive opportunities that allow diverse individuals with
lived experience to contribute in varying ways, including opportunities for them to serve
in roles ranging from entry-level to leadership positions.
¡Provide engagement opportunities for many different individuals with lived experience
to ensure that agencies do not rely repeatedly on the same individuals with lived expe-
rience. There is value in developing deep relationships, but overly relying on the same
individuals may prevent agencies from engaging diverse perspectives.
¡Create a community and foster an environment of supportive cultural diversity and in-
clusion that offers support and mutual respect for and among individuals with a diversity
of lived experiences.
¡Be cognizant of disparities in power among federal staff, their partners, and individ-
uals with lived experience. Work to equalize that power by ensuring individuals with
lived experience not only have a seat at the table but can also meaningfully contribute
to decision-making throughout the full program or project lifecycle.
¡Use a multitude of tools to identify and recruit individuals with lived experience so that
First of all, [we should] ask people if they’re willing to talk about their experience. No
one should presume that someone wants to share their lived experiences. We should
be explicit in saying, ‘Here’s why I am asking, here’s why I am asking you, and would
you be willing to?’ I think this is critical. And then asking open-ended questions about
their experience and being more in discovery mode and listening, rather than trying to
guide the conversation to get the answers that you want is really important.
— FEDERAL STAFF
Methods and Emerging Strategies to Engage People With Lived Experience | December 2021
Page15 |
opportunities for engagement are not limited to the same individuals, who may be eas-
ier or more convenient for the agency to work with. Inclusive recruitment may include
soliciting referrals from other individuals with lived experience, strategically marketing
competitive positions and engagements, and offering proactive skill development and
professional development opportunities to prepare candidates for future engagement
opportunities.
¡Consider using hiring, procurement, and spending practices that are exible to broaden
eligibility for consultants, contractors, and employees with lived experience from
underserved communities.
Use Thoughtful Engagement Practices
¡Use inclusive, plain language that is easily accessible and understandable for the general
public when communicating about engagement opportunities to ensure broad, equitable
outreach to diverse individuals with lived experience. When drafting communications or
other resources, think explicitly about the intended audience.
¡Build in enough time to allow people with lived experience to engage meaningfully (e.g.,
include lived experience individuals in the scheduling and planning processes, meet
when they can attend or be exible in participation options).
¡Develop feedback mechanisms for people with lived experience to contribute to continu-
ous quality improvement efforts related to engagement experiences.
¡Collaborate to identify mutually agreed upon terms of engagement to increase the
chances that the lived experience expert can complete or sustain their engagement.
This includes providing individuals with a voice and choice in what they share and how
they share their lived experience, as well as giving people the opportunity to choose
how they identify. For example, while this brief uses the term “lived experience,” people
may not identify with the term.
¡To the greatest extent possible, involve people with lived experience throughout the
entire decision-making process, including the conceptualization, implementation, and
evaluation processes.
¡Be mindful of secondary trauma, triggers, stigma, and cultural sensitivities that could
be experienced by individuals with lived experience when contributing to engagement
efforts, particularly when engaged as experts working as federal agency staff. Agen-
cies can mitigate secondary trauma, triggers, and stigma by incorporating strengths-
based, culturally sensitive practices and, when feasible, providing appropriate supports
and resources (e.g., access to mental health professionals, time off) to lived experi-
ence experts.
¡Review agency and staff engagement practices to ensure they do not exploit or tokenize
lived experience. For example, these efforts may include ensuring engagements provide
opportunities to substantively impact goals and questions that an initiative addresses,
instead of limiting people with lived experience to only share their stories with no way to
impact decisions.
Enact Policies and Protocols
¡Clearly dene expectations, roles, and limitations through policies and operating pro-
cedures. Do not overpromise on how or to what extent feedback from people with lived
experience will be integrated.
¡Carefully consider any limitations or constraints that existing legislation or agency policy
may impose regarding the parameters and scope of the lived experience engagement.
¡Where possible, ensure new and existing policies or legislation include actionable and
tailored requirements regarding the engagement of people with lived experience.
¡Examine whether there are structural and systemic barriers—or whether there is an
Based on my work in policy and other things, we came up with this framework for
a recommendation related to the three domains of policies, programs, and practice.
And then our goal was to get a broad group from around the country of people
representing different types of personal experience, diversity of localities, racial
and ethnic perspectives, etc. — INDIVIDUAL WITH LIVED EXPERIENCE
Methods and Emerging Strategies to Engage People With Lived Experience | December 2021
Page16 |
absence of supportive policies and practices—that may hinder appropriate levels of
resource allocation, stafng, or cultural humility efforts to effectively address equitable
access, diversity, and representation within lived experience engagements.
Conclusion
This study identied valuable practices and lessons learned about engaging people with
lived experience. Developments in recent years have heightened the need to improve the
quality and equity of human services, but people with lived experience have appealed for
changes, including those discussed in this report, for decades. It is critical for federal agen-
cies to listen to and actively engage individuals with lived experience and leverage their
program and policy implementation authority to aggressively address their needs and to
dismantle destructive, oppressive, and divisive practices within their systems and at the
agency itself.
To achieve meaningful engagement and improve both engagement outcomes and poten-
tially program outcomes, it is important for federal agencies to consider the intersections
of equity and lived experience. Our research highlights that federal agencies may return
to the same experts with lived experience, which may exclude diverse voices of individ-
uals who have historically been underserved by federal programs and policies. Initiatives
to engage people with lived experience can combat this by ensuring that lived experience
engagements are equitable in terms of access and availability to individuals from diverse
backgrounds, cultures, experiences, and walks of life; offer compensation for the expertise
individuals with lived experience provide; and share power and decision-making with the
individuals with lived experience they have engaged across all phases of the program life
cycle. Many federal agencies have engaged individuals with lived experience for years, but
there is signicant room to create new engagement efforts, expand existing efforts, and
improve practices so that federal agencies meaningfully and equitably share power with in-
dividuals with lived experience. By continuing to expand and improve engagement methods
in ways that share power, federal agencies can work collaboratively with those with lived
experience to achieve structural and systems changes that can further improve outcomes
for individuals, families, and communities that federal agencies seek to serve.
Methods and Emerging Strategies to Engage People With Lived Experience | December 2021
Page17 |
Storyteller Advisor Grantee Partner Staff
Appropriate
Roles
■ Sharing insights and
context about a problem
or issue
■ Educating outsiders
about community or spe-
cic cultural experiences
and perspectives
■ Creating space to honor,
celebrate, and priori-
tize personal and group
experiences and culture
within federal systems
■ Providing information,
feedback, and ideas
related to a program,
policy, or research area
■ Providing ongoing con-
sultation as part of a
group convened regular-
ly or as an independent
consultant who may be
vetted by a formalized
process
■ Infusing lived experience
insights into the program
and facilitating policy,
practice, and research
improvements
■ Informing services and
program delivery at the
state and community
levels through grant-
ee-level work
■ Adopting recommenda-
tions and practices to
engage individuals with
lived experience into
grant program
and services
■ Collaborating on the
creation of products,
programs, policies, prac-
tices, and services
■ Creating opportunity for
community collaboration
■ Being fully integrated
into the agency, primar-
ily as an employee but
also as a contractor
or fellow
Cross
Cutting
Tasks
■ Listening sessions
■ Public testimony
■ Interviews
■ Focus groups
■ Other forums for
representation (e.g.,
digital stories, videos)
■ Committees
■ Workgroups
■ Advisory boards
■ Individual consultations
■ Review and feedback of
work products
■ Training and technical
assistance
■ Delivery of grantee-level
programs and services
■ Engagement of peo-
ple with lived experi-
ence as part of a grant
requirement
■ Use of federal funding
that requires or encour-
ages lived experience to
improve state and local
programs and services.
■ Training and technical
assistance
■ Consultation
■ Materials development
■ Professional
development
■ Research and evaluation
■ Training and technical
assistance
■ Consultation
■ Grant monitoring
■ Research and evaluation
■ Project management and
coordination
■ Mentoring and coaching
other staff
Lived experience is the “representation and understanding of an individual’s human experiences, choices, and options and how those factors inuence one’s
perception of knowledge”
1
based on one’s own life. Lived experience provides insight into patterns, common behaviors, challenges, and barriers among indi-
viduals who share similar experiences. While individual federal leaders and staff have varying degrees of control over important engagement considerations,
they and their partners may wish to consider different strategies to engage individuals with lived experience in shaping more effective federal policies,
practices, and research. This table summarizes the potential roles for individuals with lived experience in their work with federal agencies. It describes the
appropriate uses of each role, typical cross-cutting tasks and general activities for engagement, their frequency and duration, and potential limitations and
solutions. Use this table to gauge the potential roles for people with lived experience that may be best suited for your agency and its initiative.
Staff
Appendix: Matrix of Lived Experience Roles
Methods and Emerging Strategies to Engage People With Lived Experience | December 2021
Page18 |
Storyteller Advisor Grantee Partner Staff
Appropriate
Roles
These engagements are
often time-limited, ranging
from a one-time engage-
ment requiring minimal
preparation to a series
of focus groups requiring
more information, guid-
ance, and support.
These engagements often
occur during a xed and
time-limited period set
by legislation or agency
policy. The duration of in-
dividual consultations may
be similar to storytelling
roles.
Depending on the goal,
these engagements can be
time-limited, occur at key
junctures of the grant, or
continue for the duration
of the grant life cycle. Key
junctures for engagement
may include conceptualiza-
tion, development, imple-
mentation, and evaluation
of the grant.
The duration may be uid
depending on the scope
of work, activities, and in-
tended goal. The duration
of this engagement can be
xed and time-limited or
extend throughout the life
of the initiative.
The duration will last as
long as the initiative exists,
for the duration of the
staff member’s tenure, or
as long as resources are
available to support the
engagement of the person
with lived experience as a
paid professional.
Cross
Cutting
Tasks
People with lived experi-
ence may feel some level
of tokenization, especially
in instances in which they
have little or no choice
about how they participate.
This type of engagement
is limited to information
sharing, which typically
does not provide an oppor-
tunity for individuals with
lived experience to provide
direct input into the agen-
cy’s work, programs,
or services.
To mitigate these issues,
agencies can provide
individuals with spaces
and opportunities to use
and share their voice and
provide input to agencies
about their programs
and services.
The extent to which agen-
cies engage people with
lived experience— includ-
ing the diversity and num-
ber of people engaged—
and their ability to act on
the input may be limited.
To mitigate this issue,
agencies may need to
allocate additional infra-
structure and resources
to gather perspectives
and insights from a wider
group of individuals and to
ensure their ability to act
on the input.
A grantee may not have
sufcient technical knowl-
edge, skills, infrastructure,
or resources to share lived
experience or to success-
fully engage with people
with lived experience in
instances when grantees
are asked to do so.
To mitigate this issue,
agencies should devote
sufcient planning time
and resources and facil-
itate collaborative peer
learning across grantees.
The time, infrastructure,
and resources required to
effectively facilitate the
activities can vary from
simple to complex.
To mitigate this issue,
agencies should engage in
thoughtful planning, es-
tablish clear expectations,
and implement continuous
quality improv
ement struc-
tures developed with peo-
ple with lived experience.
In addition to the issues
identied in the other
roles, staff with lived
experience may be at
higher risk of experiencing
secondary trauma, retrau-
matization, and tokeni-
zation through their work
engaging others with lived
experience or other tasks.
To mitigate this issue,
agencies should establish
a trauma-informed and
supportive agency culture
and infrastructure.
Staff
1
Given, L. M. (Ed.). (2008). The SAGE encyclopedia of qualitative research methods (Vol. 2). SAGE Publications. https://dx.doi.org/10.4135/9781412963909