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.