The Fundamental Need for Lived Experience Perspectives in Developing and Evaluating Psychotherapies

The primary professional goal of clinical psychology is to serve individuals and communities living with or at risk of mental illness. To date, our field has fallen persistently short of this goal, despite decades of research on evidence-based treatments and myriad innovations in psychotherapy research. Brief and low-intensity programs, transdiagnostic approaches, and digital mental health tools have all challenged long-held assumptions of what “psychotherapy” can be, pointing toward novel pathways to effective care. And yet, population-level rates of mental illness are high and rising, access to care remains abysmally low, early treatment drop-out among people who do access care is common, and science-backed treatments rarely make it into everyday practice (Kazdin, 2019). Why have clinical psychology’s promising innovations failed to shift the outcomes core to our professional mission?

I argue that the impact of psychotherapy innovations has been constrained by a fundamental flaw in clinical psychology’s intervention development and evaluation pipeline. From the start, intervention science has deprioritized the views and voices of those our treatments aim to support—from here, “experts by experience” (EBEs)—in the design, assessment, and dissemination of novel treatments.

Partnership with EBEs (also termed “service users” and “people with lived experience of mental illness”) is recognized as crucial to improving mental health care, both by the World Health Organization (WHO, 2013) and government mental health policies (e.g. NICE, 2013). EBE-partnered research can strengthen engagement, inform best-practices, and personalize assessments of meaningful clinical change (Roe et al., 2022). Further, in fields adjacent to clinical psychology (e.g., community psychology; social work), EBE engagement in research is common. These facts render the virtual absence of EBE partnership from mainstream psychotherapy research especially striking. Without centering EBE views, intervention scientists cannot optimize supports for the diverse communities they aim to serve. Instead, they risk building programs that people with mental health needs may never access, benefit from, or want.

Why Are Lived Experience Perspectives Deprioritized in Psychotherapy Research?

There is a long history in the U.S. of developing and testing mental health supports in isolation from those they are meant to treat. The reasons for this disconnect may partly reflect longstanding stigmas that elevate the knowledge of “experts” (psychiatrists, psychologists, psychotherapists) over their patients. “Psychiatric paternalism” has been examined previously (Pelto-Piri et al., 2013), and its influence is evident in federally-backed structures for developing psychotherapies. Historically, the National Institutes of Health has endorsed a process for developing psychotherapies mirroring that of pharmaceutical research. Within this efficacy testing method, new therapies are first designed by researchers (and only researchers) in a lab and then tested under curated, “ideal” conditions to determine their utility. That is, they are tested with the “right” patients (those with no complex life stressors or co-occurring problems, like suicidal thoughts or drug use), the “right” therapists (experts trained by the researchers) and ensuring 100% treatment completion (by paying patients to attend sessions and excluding those who drop-out early). Typically, it is only after multiple efficacy trials that a new treatment is tested in real-world conditions—for the real, complex clients and overburdened, under-resourced therapists—to gauge public health impact.

Although this “efficacy-first” approach may fit for medication-based treatments acting on biological targets, it has proven inadequate for psychosocial treatments, for which effectiveness, acceptability, and implementation are tightly linked to contexts of care. Weisz and colleagues (2004) proposed an alternate to efficacy trialing, the deployment-focused model for psychotherapy development, which includes steps to locate the process of building and testing interventions within the contexts most relevant to the interventions’ intended applications. However, even in this improved model, EBE partnership is nowhere to be found. It remains the researchers (with input from therapists, but not patients) who drive the structure, content, and studies of the treatments at hand.

What Do We Risk by Excluding EBEs From Psychotherapy Design and Evaluation?

Without including EBEs in treatment development pipelines, psychologists risk reifying field-wide blind-spots, reverting to researcher-centered models of intervention design, and continuing to create supports that deprioritize the needs and wants of those they are designed to help. Certainly, intervention scientists bring necessary expertise to the design of new, hopefully-improved mental health programs. But the value of scientific expertise neither negates nor supersedes the need to center EBEs in this work. Inherently, psychologists’ ideas for novel treatments are constrained by our professional training, field-wide norms, and baked-in assumptions about how intervention research can and should be done (which, perhaps, helps explain how psychologists have produced hundreds of psychotherapy manuals containing minor variations of the same basic clinical content). Likewise, EBEs have their own subjectivities, but they also hold perspectives and positionalities that many psychologists do not. They bring first-hand knowledge of the barriers and facilitators to (not) accessing and (not) completing treatment, including where and from whom they would most realistically engage with care. They bring knowledge of what outcomes might be key to understanding treatments’ benefits and harms. I am not suggesting that EBEs’ expertise should be prioritized by default in developing and testing therapies, but that researcher knowledge and EBE knowledge are equally indispensable to optimizing treatments for public health impact.

It is also notable that “EBEs” and “scientists” are not mutually exclusive categories. That is, there are many clinical psychology researchers, including myself, who identify as both scientific experts and EBEs living with mental illness. For instance, in a survey of ~1,700 applied psychologists and trainees in North America, >80% reported experiencing mental health problems at some point in their lives (Victor et al., 2022). My colleagues and I have argued for the need to leverage of the strengths of psychologist EBEs (Victor, Schleider, et al., 2022), such as the integration of psychologist EBE perspectives into our field’s research. However, given inherent power differentials and divergent lived experiences between scientist- and non-scientist EBEs, the perspectives of scientist-EBEs cannot replace those of non-scientist EBEs in treatment design and evaluation. That is, even when a treatment design or evaluation team includes a psychologist EBE, it remains necessary to partner with EBEs without proximity to the privileges that accompany formal training in psychological science.

Designing treatments based on etiological models of psychopathology and scientist-generated innovations of will never be enough. To achieve real impact, we must build treatments to overcome barriers and meet the needs of those who have (and haven’t) been helped by existing forms of care.

Case Example from Clinical Psychology: Centering the Needs of Youth EBEs to Increase Access to Depression Treatment.

Recent research on the treatment of adolescent depression highlights the potential value of centering patient perspectives in designing and disseminating interventions. Historically, teens’ involvement in mental health treatment and intervention research has required the active consent of a parent or guardian. Unfortunately, adolescents also cite parents as a major barrier to accessing mental health support—especially sexual minority, gender minority, and racial/ethnic minority adolescents, who express concerns about caregiver dismissal linked to the rejection of one’s identity, beliefs about seeking mental health treatment or both (Brown et al., 2016). Due to these challenges, parents are unaware of their teens’ depressive symptoms, including suicidal ideation, in up to 80% of cases (Brahmbhatt & Grupp-Phelan, 2019). Positioning parents as de-facto gatekeepers to treatment precludes all but the most privileged teens—those with supportive parents who proactively seek treatment and clinical research opportunities for their children—from accessing depression-related support.

Adolescents’ structurally constrained treatment access reflects the natural end-result of building interventions through the lens of those with clinical decision-making power (researchers, parents), based on service models they (rather than youth experiencing distress) view as optimal. Fortunately, centering adolescent needs in treatment design is both possible and feasible: Multiple trials have shown that adolescents can safely access, complete, and benefit from certain types of low-intensity interventions for depression (Schleider et al, 2022; Schleider et al., 2020). My research team has worked for years to design brief, scalable interventions for adolescent depression; in designing them, we have prioritized where adolescent EBEs tend to seek support (online) and what they say they need from mental health tools (privacy; autonomy; convenience; Kruzan et al., 2022). Based on these EBE insights (including their perceptions of parents as barriers to accessing care), we pursued and secured formal waivers of parent consent from our IRB, allowing us to run several trials of online single-session interventions (SSIs) in which adolescents with depression could self-refer into our studies. Our resulting work has suggested that teens can safely participate in online SSIs for depression, and that SSIs can reduce depression severity in high-symptom teens at least 3 months later (Schleider et al., 2022). Waiving parent consent also seemed to boost our sample’s diversity: One of our recent trials (N = 2,452) included population-congruent proportions of Black, Hispanic, Asian, and Native American U.S. youth, and 80% of the teens identified as sexual minorities (Schleider et al., 2022). Most youth therapy trials include samples that are >90% white and seldom assess sexual orientation at all (Weisz et al., 2017). Thus, centering youth EBEs’ needs allowed thousands of teens to access a safe, evidence-based program, including many from groups that are underrepresented in treatment research. Prioritizing EBE needs can benefit the rigor and impact of intervention science, ensuring programs are optimized for uptake and sustainment in their very design.

Conclusions and recommendations.

To date, psychotherapy innovations have failed to reduce population-level mental illness or increase access to evidence-based support. Achieving these goals will require a radical reimagining of standard treatment design procedures: One that acknowledges the impossibility of developing sustainable, community-responsive interventions without EBE partnership. Systemic changes are needed to support EBE participation in research. Initial steps might include (1) Inviting EBEs to serve on grant review panels (in some agencies, such as the Patient-Centered Outcomes Research Institute, this is already standard practice); (2) Creating funding streams for EBEs to join federally-funded mental health research as co-investigators (rather than as one-off “consultants” who often participate only after the trial and treatments have already been designed); (3) In published papers on treatment trials, requiring a statement describing EBE involvement (and, if EBEs were not involved at any point, the authors might explain why not); (4) Enhancing cultural humility training for clinical psychology students to include effective EBE collaboration from the earliest stages of their research.

Ultimately, many recent innovations in psychotherapy research do hold promise to improve population-level mental health. But the only ethical, practical path to realizing this promise is through intentional collaboration with the people those innovations are meant to serve.