I am delighted to announce that the Patient Centered Outcomes Research Institute (PCORI) here in the US, has awarded myself (based at the University of South Florida) and colleagues at Yale (Larry Davidson, Chyrell Bellamy) a grant to develop a national early psychosis stakeholder research involvement network in the US. Associated activities will include the development and evaluation of both live (in person) and virtual (online) trainings for young people and family members, an embedded mini-grants program designed to facilitate youth-led resource development, and the development of a virtual (web-based) resource hub designed to increase engagement between and among members of the early psychosis research communities and those directly impacted by research and available services. The project team will be working closely with OnTrackNY leadership (with the in person trainings slated to be piloted in NYC). We have also benefited enormously from the support of key early psychosis figures both nationally and internationally including Dr. Lisa Dixon (Columbia & OnTrack), Sascha Altman DuBrul (OnTrack), the late Dr. Larry Seidman (Harvard), and the IEPA (formerly 'International Early Psychosis Association') board, as well as multiple national advocacy groups.
An undertaking such as this is, to be quite honest, extremely daunting, particularly in its bid to facilitate horizontal engagement nationally, not just within the research programs directed by those of us who are already sold and committed. Our mandate therefore includes significant efforts to reach, reach out to, and involve, early psychosis researchers without a background in participatory methods or prior experience undertaking co-produced research. We are also committed to working across disciplinary and ideological lines: i.e. promoting engagement in translational as well as clinical and services research, and the involvement of stakeholders who may--presumably will--bring a variety of perspectives, values and priorities to bear on the question of how we can proceed as a field in order to improve outcomes, change systems and change lives. Explicitly, our commitment to diversity extends to the representation/inclusion of groups and communities historically under-represented even within advocacy initiatives, whether on the basis of race, ethnicity or culture, or background structural and socioeconomic disadvantage.
While the focus of this particular project is the US, in line with PCORI's statutory obligations, we welcome the involvement of international researchers and stakeholders and hope that the resources, tools and strategies we develop will be of use beyond North America. (We are also aware that many countries are far more advanced than the US when it comes to the integration of stakeholder involvement and leadership within behavioral health research; we hope to learn from them). And if you're an interested researcher or stakeholder, please don't hesitate to contact us (here's my direct email). Contracts are still getting signed at this moment, but eventually a dedicated project site will be erected--stay tuned for that announcement.
The Need for Service-User Led Research on Psychotherapeutic Practice & Technique: A Psychotherapist’s Perspective - Marie Hansen
During the early days of psychotherapy, a clinician’s understanding of the therapeutic process was closely associated with personal experience. With the influence of psychoanalysis came an expectation that clinicians should undertake their own therapy. You had to be a patient in order to be a therapist, and it was assumed that you could not adequately understand the psychotherapeutic process without first having been a patient yourself. In this way, knowledge about treatment was primarily derived from a lived-experience perspective. Although it is easy to eschew psychoanalysis for reductive or distancing language (at least in its more classical iterations), it should not be forgotten that the psychoanalytic approach has always been grounded within a framework that sought not differentiate between oneself and one’s patients. All were seen as prone to the same intrapsychic conflict(s) and “common unhappiness” (Freud, 1895).
With institutional pressures forcing the pursuit of “evidence-based” research to determine psychotherapeutic “efficacy,” a radical shift has occurred— no longer is the scientist’s subjective experience considered worthy of serious attention. Instead, research is thought legitimate only when one upholds a (seemingly) objective stance. In turn, the individual participants or “stake-holders” of psychotherapy treatments are no longer active participants within the research and development of therapies. Instead, research is conducted primarily by outside observers and based on targeted outcomes created by third-parties. Although there has been some shift in in recent years, for example, with research into peer-support groups such as the Hearing Voices Network, the extent to which the experience of service-users now influences clinical practice is limited. When participating in research, peer perspectives are often ‘justified’ through a clinical framework, as opposed to clinical frameworks being influenced (or justified) by peer perspectives.
My interest in the TRP Collaborative is to bring back the role of stake-holders/service-users in the development of psychotherapeutic treatments/approaches. As a clinical psychology trainee and therapist, I am particularly interested in how therapy is experienced by those who attend it; what their ideas are for how we can improve it; and what outcomes they personally find meaningful. The TRP Collaborative is one place where this type of dialogue can begin to develop. Together, I look forward to seeing what shifts we can bring to psychotherapy research and practice.
Here is a very tired scenario: you, the minority (lived experience or disability or race/ethnicity or gender identity and etc.) find yourself in a group (conference, advisory committee, edited book compilation) and immediately realize you’re the only one of your kind, at least in any visible way, exactly the ‘kind’ the conference or committee or book is about. Is this not glaringly obvious, you think to yourself, but bite your tongue, and tell yourself “let’s approach this by trying to be as polite and non-confrontational as possible, point out the disparity and offer to discuss or provide suggestions.” Your concerns are promptly dismissed. Because you have already heard that tone of voice, these strategies for communicating the message that while yes, you do have “a point”, not enough of one.
Now the blood begins to rise. You think to yourself, “should I now try to elicit support from other members of the group, whose opinions might actually have an impact on the organizers?” Or will it all backfire (which happens most of the time, and because you have done this so many times, you know it, that’s your bet.) In this case, you go ahead and email the others anyway. It does; it works, it also backfires. It works at the cost that you have now (1) placed yourself into a role you manifestly do not in fact want to occupy—the token person whose cool rationality, as the stereotypes themselves already suggest, cannot be maintained; the token identity-category person who is over-sensitive, the token identity-category person who has now burned bridges because of what you’ve done, and the social capital you had to expend, precisely to achieve this pyrrhic non-victory.
Because you have had versions of this conversation with dozens and dozens of friends and colleagues over the years, you know that for most people who fall into these categories, the above narrative hardly even needs the amount of detail given it here. The question is not, therefore, do those who have repeatedly fallen into such roles understand, but do those who have not, understand—can they, would they, might they? Or is the polarization we currently find, in which overly rigid identities (that, I would be the first to admit, can be deeply problematic) can only rigidify still further? Till “us” and “them” are no longer just cultural and symbolic categories, but bindingly tangible, visceral, structural.
The TRP Collaborative would welcome dialogue and deep thinking as to how we ever get past such impasses, and to do so we believe it must be actual dialogue. Willing to write some reflections on these issues here or in another space?—please let us know, or do it and we’ll cross-link here.
When offered an opportunity to write a blog introducing the launch of TRP, I jumped at the chance. I recently declared, “I am not a researcher.” I said that to differentiate my perspective on how to frame questions for expanding and deepening knowledge about anomalous human experiences like hearing, seeing, sensing and believing differently from those around us. I recognized that I lacked skills in design and analysis that academic researchers easily employ. What I have in common with some of those researchers is my passionate drive to understand more fully, to grow into my best relationship with other human beings, our communities, and planet.
Having opportunities to fully participate in developing a research base is a rare privilege for those of us who have been research “subjects-objects” because our contributions have traditionally been limited to “our” data gleaned from tests, evaluations, and measurements of what the experts-by-training historically considered important. New knowledge evolves from continual refinement of questions asked, yet all of those questions rely on presuppositions that are often implicit and perhaps unacknowledged by those socially located within our educational, cultural, political, and economic systems to produce that research. The language and questions asked by those most embedded in a dominant culture will always contain presuppositions shaped by that dominant culture’s values, beliefs, and motivation for maintaining its systems and structure. Those of us most outside the dominant center also carry questions shaped by our social location. Our motivation for growing knowledge can carry implicit presuppositions that lean towards discoveries that might disrupt and redistribute knowledge and create new power relationships and shared freedom. I affirm that I carry the effects of all those presuppositions, and I commit to seeking and contributing to research that honors us all. This will require ongoing consciousness raising and trust building to co-create a learning community that is most fully inclusive. I am prepared to learn. I am prepared to unlearn, to make mistakes, and to accept my limitations and the limitations of others.
We know that an observer or person asking questions impacts what is being observed or questioned. We know that our choice of language impacts how we understand and are understood. I hope that we can reflect on these relationships and recognize that our social and environmental context is continually shifting based on our presence. I have learned from experiences that transcended words. That knowledge fuels my desire to join with others in a practice of continual curiosity, one that dares to be open to not knowing and accepts every step towards learning and freedom as shared process. My plea is to let our imprint be one that makes greater space for new perspectives, seeds future growth of knowledge, some not yet imagined. That we practice together making space for all and learning together.
Myself a wearer of many hats--researcher, practitioner, and activist among them--I've been trying to do participatory, stakeholder-driven or emancipatory research for some time. Originally, my inspiration was my own experience, as a young person with absolutely no training in research methods, as a terrified subject of other people's 'schizophrenia' research; later, through community involvement and engagement, this evolved through a much deeper understanding of the extent to which stakeholders (in the case of mental health, persons with first hand experience) are cut out of the research process, a form of social and political exclusion leading to a narrowing of the questions researchers ask, oversimplification of complexities and nuances that are often visible or present only for those experiencing whatever is under investigation, and analyses and interpretations that all too often lack vital social and cultural context and therefore either fail to acknowledge or unwittingly devalue it.
Addressing these problems, however, is another story. In one of my personal favorite commentaries, Majid Rahnema, a long time international 'development' leader, re-describes participatory research as the "last temptation of saint development"--a method and philosophy, that is, that bolsters researchers' perceptions of themselves as social justice workers, but mostly only when the views of "the community" align with their own. (And when they don't, he observes, it's most often chalked up to 'internalized oppression,' insufficient 'conscientization' or critical self-awareness, and so forth.) But ego-boosting self-deception is hardly the only participatory pitfall; in the hard, messy 'real world,' power differentials are rarely truly addressed (much less 'leveled') by participatory approaches, and it is almost always the professional researcher who benefits most (through publications, grants and traditional academic career rewards), not the community.
Participatory research--research truly influenced by a diverse, messy and inconvenient mix of experientially-driven agendas and perspectives--is therefore something I in no way consider myself an 'expert' in, but rather something I aspire to, keep failing at, and keep trying to do better nevertheless. My personal motivation for getting involved in TRP, stemmed from one such experience of failure and my subsequent self-reflections and self-questioning regarding how we can do better, how we can be more inclusive, how we can stop paying lip service to participation and actually, really, truly give up our power, our expertise, our sense of epistemic authority, as researchers, and let others make decisions that matter, that stick, and that we are compelled to follow rather than the other way around. And, make no mistake about it, that is very, very hard.