Methods and Emerging Strategies to Engage People With Lived Experience | December 2021
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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 specic
roles and activities (typically with
people with lived experience en-
gaged as advisors, partners, and/or
staff) were more dened and tied to
specic 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 specic 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?