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Lived Experience, Research Leadership, and the
Transformation of Mental Health Services: Building a
Pipeline
Journal:
Psychiatric Services
Manuscript ID
APPI-PS-2020-00468.R1
Manuscript Type:
Open Forum
Subject Categories:
Research design & methodology - PS0243, Stigma/discrimination
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Lived Experience, Research Leadership, and the Transformation of Mental Health
Services: Building a Pipeline
Nev Jones1*, Kendall Atterbury2, Louise Byrne2,3, Michelle Carras4, Marie Hansen5 & Peter
Phalen6,7
1. Department of Psychiatry & Behavioral Neurosciences, Morsani College of Medicine,
University of South Florida, Tampa; Corresponding author: Nev Jones
genevra@usf.edu
2. Program for Recovery and Community Health, Department of Psychiatry, Yale
University, New Haven
3. School of Management, RMIT University, Melbourne, AU
4. Department of International Health, Bloomberg School of Public Health, Johns Hopkins
University, Baltimore
5. Department of Psychiatry, Columbia University Vagelos College of Physicians and
Surgeons, New York, NY, United States
6. VA Capitol Healthcare Network (VISN 5), Mental Illness Research, Education, and
Clinical Center (MIRECC), Baltimore
7. Division of Psychiatry, University of Maryland School of Medicine, Baltimore
Disclosures: The authors report no conflicts of interest.
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Abstract
In recent years, investment in participatory research methods within mental health services
research has grown. Participatory efforts are often limited in scope, however, and attention to
research leadership is largely absent from discourse in the United States. In this commentary,
we call for investment in building a pipeline of researchers with significant psychiatric
disabilities and intersecting lived experiences frequently studied in public sector services
research, including homelessness, incarceration, co-morbid physical health problems, structural
racism, and poverty. We describe a series of concrete steps that faculty and research leadership
can take now.
Over the past 20 or so years, participatory approaches to mental health services research have
gained considerable momentum and growing representation within the pages of Psychiatric
Services. However, as both reviews and national surveys suggest, participatory involvement
efforts tend to be mostly surface-level, often limited to a stakeholder advisory group or "one
touch" consultation activities.1-3 And while co-production strategies, in which researchers and
community members exercise equivalent leadership are important additions to the family of
meaningful involvement, concerns have consistently been raised as to the extent to which such
approaches actualize stated goals; further, huge structural barriers, such as the ineligibility of
non-faculty researchers for NIH primary investigator roles, fundamentally limit, and reproduce
inequities, in capacity to initiate and lead funded research.
In order to play a more meaningful role in research and in turn realize the potential for deeper
and more transformative change, we thus argue that individuals with lived experience of the
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conditions, systems and services we study must be central research decision makers.4-6
Consultation—understood as predominantly unidirectional activities designed to gather
stakeholder input or feedback—is not a substitute for direct involvement and leadership in
project decision-making.4 In research contexts, this means major roles in developing research
ideas, setting agendas, obtaining funding for, initiating and leading substantial research projects.
Reaching this level of involvement, in turn, will require a serious investment by the mental
health services research community in developing and sustaining a pipeline of mental health
services researchers with experience of significant disabilities.
What “lived experience” means here
Before we continue, a note about terminology. Whenever advocates make the argument for
greater involvement of people with "lived experience" in the research process, a frequent
counterargument is that “mental illness” is already amply represented within existing research
efforts: among students, faculty and clinicians. If our definition of "lived experience" is mild to
moderate anxiety and depression, such as that treated in an outpatient or primary care setting,
this is demonstrably true.7 In fact, the myriad social and academic pressures within research
pathways have themselves been repeatedly associated with high stress and poor mental health.
In this Open Forum our purpose is not to define “lived experience” or its variants in any
particular way, but rather pivot to emphasize diversification of the perspectives represented, with
explicit attention to severity of impact and intersectionality. Clearly there is a continuum from
mental health to (functional) disability, and from widely accepted (normative) psychological and
emotional states to those socially constructed as non-consensual and unacceptable. In this paper,
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we want to emphasize the need for greater inclusion of individuals at the farther end of these
continua: those with the most (potentially) disabling and stigmatized diagnoses, such as
schizophrenia, borderline personality disorder, and severe substance use disorders; with
intersecting experiences of the public benefits system, homelessness, housing instability,
incarceration, poverty, racism and other forms of structural discrimination; and whose
experiences or diagnoses, for one reason or another, have led to strongly negative societal
responses, including social rejection and clinical force. Too often debates about the terms we
employ ("lived experience," "service user" etc.) serve to obscure a continuing reluctance to
commit to, and support, individuals who have faced significant and substantial barriers to their
participation in higher education and research, thereby also excluding the insights and
experiential knowledge that such histories help engender. Through the remainder of this paper
we use the abbreviation PD/LE to refer to significant psychiatric disabilities/lived experience(s).
Blueprint for a transformed workforce
With this context in mind, the particular goal of this Open Forum is to advocate for intentional,
formalized, workforce development. Specifically, we call for efforts and initiatives that
acknowledge and support people with PD/LE across the academic training and funding
continuum, including undergraduate students, research assistants/associates, and early- and mid-
career researchers, and that do so on a meaningful scale. Rather than supporting or celebrating a
small handful of researchers who have made it “against all the odds” we ask for investment in
building a diverse and sustainable pipeline, and making systemic changes needed to help ensure
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that PD/LE researchers are ultimately significantly better represented within the ranks of tenured
faculty and extramurally supported primary investigators.
Expanding on broader research and best practices in mentoring, workforce diversity, inclusion,
and antidiscrimination,8 we propose a series of actionable steps detailed in Table 1. These steps
are meant to be suggestive rather than comprehensive, and exclude broader supports with
relatively more established empirical and pollical backing (such as student and employee
wellness programs).
Proactive recruitment, hiring and sponsorship
As has been the case with efforts to diversify the research workforce in terms of race and gender,
recruitment and hiring of PD/LE students, staff and researchers must be proactive. Academic
programs and research teams should, for example, reach out to peer/service user groups and
organizations on campus and in the broader community. Recruitment advertisements must
convey thoughtful, concrete support forPD/LE, and explicitly encourage applications from
individuals with experience relevant to the focus area of the lab or research center. For example,
a center focused on homelessness and mental illness might communicate strong interest in
applicants with a history of homelessness and/or mental health challenges. We want to
emphasize that there is virtually always the choice, with a new funded project, to hire one or
more students or support staff identified with the community of interest or instead, as the
rationale sometimes goes, to prioritize efficiency; we strongly encourage investment in the
former. Disability statements as part of the application process are a legally sanctioned way of
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discerning what a given applicant might bring to the table, especially when support for PD/LE
has been successfully communicated.
Combatting academic ableism
Work environments must actualize the support conveyed in welcoming recruitment materials.
Critically, this must include a flexible approach to work and academic accommodations, and
active commitment to challenging ableism—i.e. the assumption that psychiatric disability is the
antithesis of academic excellence9. All too often students and young people with a history of
significant disability will already have internalized society’s judgments and lowered
expectations. Patience, flexibility and reassurance from senior faculty, mentors and supervisors
is essential. Additional direct and indirect actions noted in Table 1 including increasing the
visibility and representation of disclosed PD/LE researchers on journal and professional
association boards and committees, and as invited conference and colloquia speakers, and
working to develop academic cultures that emphasize the value of the perspectives and insights
that PD/LEs bring.
Recognition of and support for multiple roles and identities
Students, fellows and research staff with "lived experience" identities also often face a unique set
of emotional challenges navigating research spaces in which it is normative to speak of
individuals with mental health/psychiatric diagnoses in othering, medicalized ways. A
dispassionate discussion of outcomes tied to involuntary hospitalization or restraint that is
unremarkable to a student with no connection to such experiences, for example, can be deeply
painful for a student who has themselves been restrained in an inpatient ward. Typically, such
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pain is suppressed in order to appear the objective scientist. Similarly, research trainees may be
asked to adopt language (e.g., “mental illness” or “brain disorder”) that has been rejected by the
advocacy community with which they identify. These situations can easily become a major
source of personal stress for individuals, particularly early in a research career when it is difficult
to speak up and request changes to collaborative work or feel sufficiently empowered to
communicate the concerns of a particular community. Over time, internal struggles can further
erode students’ confidence. Having a mentor who validates these struggles and personally
addresses them where possible, is critical.
Breaking glass ceilings
In the US, individuals with disabilities of all kinds remain seriously under-represented among the
ranks of tenured faculty.9 As has been well-documented with respect to women and members of
under-represented minority groups, mentoring and support cannot stop with the completion of a
doctorate. Both tenure and “independence” in research funding are glass ceilings that can be
exceptionally difficult to break through. To do so, mentors, department chairs and others in
leadership positions need to commit to actively supporting the retention, promotion, and
successful grantsmanship of PD/LE fellows and junior faculty. Many models to support
advancement for other under-represented groups have been developed, including targeted
fellowships, mentoring programs, and summer training institutes.8 In psychiatry and allied fields,
to the best of our knowledge, no such explicit structures exist for PD/LE researchers.
Speaking up and speaking out
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We are aware of at least a handful of researchers who have written "coming out" stories, some
within the pages of Psychiatric Services. Important, if exceptional, efforts to address
discrimination in licensure have been led by senior clinicians with lived experience10 and to
document the disclosure and accommodation experiences of faculty with psychiatric
disabilities.11 There are nevertheless innumerable times and places in which “speaking out” on
issues of inclusion would be possible, many with existing analogues in efforts to address the lack
of inclusion of women and racial/ethnic minorities. For example, board members—whether of a
journal or research association—calling attention to the lack of PD/LE representation; or faculty
actively questioning admissions practices in which disclosure of mental health experiences are
flagged as a “kiss of death”, as has been reported in the literature.12 Speaking out is important
both locally, and in public venues such as academic journals. The impact of senior thought
leaders publicly pushing for greater support and inclusion of those with PD/LE in academic
projects, for example, could be far-reaching.
Conclusion
In this Open Forum, we have argued that the actualization of meaningful lived experience
involvement in research requires not just inclusion but leadership. We call for greater, and more
purposive, investment in building a pipeline of researchers with personal experiences of
significant psychiatric disabilities and other target experiences frequently studied in public sector
mental health services research. Investing in this pipeline will require commitment and action—
commitment that remains achievable and fully aligned with the social justice aspirations of fields
such as community psychiatry, community psychology and social work. We encourage leaders in
these fields to embrace the challenge and act now.
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References
1. Concannon, TW. Fuster, M. Saunders, T., et al. A systematic review of stakeholder
engagement in comparative effectiveness and patient-centered outcomes research. J Gen Int
Med. 2014; 29: 1692-1701.
2. Freeman E, Seifer SD, Stupak M, Martinez LS. Community engagement in the CTSA
program: Stakeholder responses from a national Delphi process. Clin Trans Sci. 2014;
7:191-5.
3. Hood NE, Brewer T, Jackson R, Wewers ME. Survey of community engagement in
NIH‐funded research. Clin Trans Sci. 2010; 3:19-22.
4. Jones N, Harrison J, Aguiar R, Munro L. Transforming research for transformative change
in mental health: Towards the future. In Community psychology and community mental
health: Towards transformative change. 2014:351-72.
5. Sweeney A, Beresford P, Faulkner A, Nettle M, Rose D. This is survivor research. PCCS
Books; 2009.
6. Russo J. Survivor-controlled research: A new foundation for thinking about psychiatry and
mental health. Forum: Qualitative Social Research 2012; 13.
7. Evans TM, Bira L, Gastelum JB, Weiss LT, Vanderford NL. Evidence for a mental health
crisis in graduate education. Nature Biotech. 2018;36:282-94.
8. National Institute of Mental Health. An investment in America’s future: Racial/Ethnic
diversity in mental health research careers. 2001.
9. Dolmage JT. Academic ableism: Disability and higher education. University of Michigan
Press; 2017.
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10. Boyd JE, Graunke B, Frese FJ, Jones JT, Adkins JW, Bassman R. State psychology
licensure questions about mental illness and compliance with the Americans with
Disabilities Act. Amer J Orthopsychiatr. 2016; 86: 620-26.
11. Price M, Salzer MS, O'Shea A, Kerschbaum SL. Disclosure of mental disability by college
and university faculty: The negotiation of accommodations, supports, and barriers.
Disability Studies Quarterly. 2017;37.
12. Appleby DC & Appleby KM. Kisses of death in the graduate school application
process. Teaching of Psychology. 2006; 33: 19-24.
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Table 1. Actionable Steps to Help Build a Diverse Lived Experience Pipeline
Domain
Problem
Actionable Step
Employment
Invisibility or absence of
initiatives to proactively hire
PD/LE research staff
Visibly and proactively advertise for, recruit and hire
undergraduate and post-graduate lab managers, research
assistants and other staff
Underutilization of NIH diversity
supplements to support PD/LE
individuals
Take advantage of NIH diversity supplements as a mechanism
to include and support students and trainees
Under-representation at the
faculty level
Include psychiatric disabilities in faculty diversity initiatives,
signal support for applicants with PD/LE, and address
discrimination in hiring
Program
Admissions
“Red flagging” applicants who
mention mental health
Articulate and enforce program policies that preclude any use
of psychiatric disabilities for the purposes of disqualification
Admissions protocols that punish
students with disabilities for
disrupted academic trajectories
Explicit acknowledgement and allowance of disruptions due to
lived experience/disability and reframing of experiences of
adversity as diversity assets; removing so called "bright line"
disqualifiers to matriculation, such as specific grade point
averages or GRE scores
Absence of visible support for
PD/LE applicants
Clearly communicate on websites, admissions materials, etc.
that applicants with psychiatric disabilities are welcome, will
be supported and accommodations guaranteed
Academic
Ableism
Lack of visible support in
academic departments and
research centers
Senior researchers “speaking out and speaking up” with regard
to support for students & junior colleagues (see main text)
Unhelpful academic
accommodations
Provision of academic accommodations that actually meet the
needs of individuals with often complex and multifaceted
mental health challenges, going well beyond minimal (often
physical and sensory disability based) interpretations of the
ADA
Lack of visible role models
Highlighting the accomplishments of, invited speakers, and
organizing events featuring successful PD/LE graduate
students, postdocs and researchers
Lack of visible support within
professional clinical and training
associations
Mental health research and professional associations should
include individuals with disclosed PD/LE on boards and
committees, develop fellowship and mentoring programs akin
to those found for members from under-represented gender
and racial/ethnic groups, and publicly signal support on
websites and in the planning of conferences and selection of
invited speakers
Deficit-oriented academic cultures
As noted in the main text above, deficit language is often
ubiquitous in academic departments, abnormal psychology
courses and , especially with respect to “SMIs” such as
schizophrenia, and active efforts must be made to de-
emphasize deficits and cultivate a deeper understanding of the
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impact of of such language on PD/LE students, staff and
faculty
Lack of representation on journal
editorial boards
As is increasingly common in the UK, journal leadership,
including high impact journals, should include researchers
with disclosed psychiatric disabilities on editorial boards
Tokenism when including
trainees/researchers with lived
experience on grants
When PD/LE researchers or research staff are included on
grants, the purpose should not be tokenism or superficial
representation, but rather intended to support meaningful
contributions, and, where present, consideration of concerns or
criticisms with project design, implementation or analysis
Other
Prejudice &
Discrimination
Micro-aggressions & derogatory
language about psychiatric
disabilities
Increasing awareness of (unintentional) micro-aggressions,
such as ubiquitous references to school shooters as “crazy” in
classroom settings, or tolerance of derogatory comments about
people with stigmatized diagnoses or addictions (who may in
fact be in the room), particularly by instructors, faculty and
leadership
“Benevolent othering”
Increasing awareness of and sharply limiting ostensibly
empathetic or benevolent descriptions of PD/LE that in fact
reinforce rather than challenge stereotypes about ability,
capacity and potential for intellectual contributions
Funding
Glass ceilings with respect to
extramural funding
Additional, formal and informal, mentoring and support for
PD/LE early career and junior researchers to obtain
independent extramural funding
Lack of dedicated funding for user
involvement and leadership
Explicit requirements that stakeholder participation be present
in every funded clinical and services grant (as already
mandated by the National Institute of Health Research in the
UK) and explicit support for service user-led projects and
community based participatory research
NIH does not allow applicants to
select “psychiatric disabilities” as
their disability category
Rather than placing psychiatric disabilities in a catch-all
“other” category, allow applicants to select psychiatric
disability as a standalone choice
Lack of transparent reporting on
success rates of applicants with
psychiatric disabilities
NIMH, NIDA and other entities funding work on mental
health/disability must regularly and transparently report
submission and success rates for applicants with disclosed
psychiatric disabilities
Explicit inclusion of proposal
reviewers with PD/LE
In parallel with initiatives to increase representation of
reviewers from other under-represented groups, researchers
with disclosed psychiatric disabilities should be explicitly
sought for both ad hoc and standing NIMH/NIDA (and other
relevant) review committees
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