A project by Yale School of Medicine researchers and collaborators will use the experience of people with borderline personality disorder (BPD) to shape the treatment and care of people with the mental health condition.
The project, funded by the Eugene Washington Patient-Centered Outcomes Research Institute (PCORI) Engagement Award Program, will enable people with BPD, their families, and supporters to be consultants and partners with scientists in BPD-focused, patient-centered, comparative clinical effectiveness research. Researchers from Penn State will collaborate with the Yale scientists.
Clinical effectiveness research (CER) compares healthcare options and examines real-life outcomes that matter most to patients, families, clinicians, and communities.
“The best CER is built with the people it is intended to serve,” says Margaret Davis, PhD, associate professor of psychiatry at Yale School of Medicine. “When people with lived experience of BPD and their families are genuine partners in research, they help ensure that studies address the questions that matter most and produce findings that are both relevant and impactful.”
Davis and Sarah Fineberg, MD, PhD, assistant professor of psychiatry, will lead the work at Yale. The project is called Building Capacity to Engage in Patient-Centered CER Focused on Borderline Personality Disorder, or LEaF-BPD.
BPD is common, high-risk, and costly for individuals, families, and health systems. However, CER that can help guide decisions about BPD care is limited.
One reason for this gap is that people with lived experience of BPD and their families and supporters have often been excluded from shaping research questions, study designs, and outcome priorities, scientists say. This exclusion is often reinforced by stigma, lack of training, and uncertainty about how researchers and lived-experience partners can collaborate effectively.
Without structured and meaningful engagement with people with lived experience with BPD, research may measure the wrong outcomes, miss real-world barriers, and produce findings that are less useful for the people most affected by BPD.
Through this project, the team will develop, pilot, and publicly distribute a free consultation-training manual designed to prepare both LEaF-BPD partners and researchers for respectful, effective collaboration. The manual will support lived-experience partners in contributing confidently to research and help researchers better understand how to involve LEaF-BPD perspectives in meaningful, non-tokenizing ways.
The project will unfold in four phases over two years. In the first phase, the team will conduct a needs assessment through separate focus groups with LEaF-BPD stakeholders and BPD/CER researchers, along with input from a broader Community Stakeholder Board that may include clinicians, administrators, and advocacy leaders. Focus groups will be co-led by a researcher and a lived-experience leader to model shared power and identify what is needed for meaningful co-production.
In the next phases, the researchers will use the needs assessment findings to create and refine a consultation-training manual focused on shared research language, patient-centered outcomes, communication across lived-experience and academic perspectives, and structured consultation methods. The manual will be evaluated through training cohorts, repeated feedback, pre/post measures of knowledge and readiness, and pilot consultation sessions in which trained LEaF-BPD partners provide structured input to researchers on BPD CER projects and proposals.
In the final phase, scientists will publicly release the manual and supporting materials under a Creative Commons license, making the resource freely available to researchers, lived-experience partners, advocacy organizations, and others interested in improving patient-centered engagement in BPD research. The project team will also share findings through conferences and peer-reviewed publications.
Project collaborators include representatives from Yale, Penn State, and community and professional partner organizations that will support recruitment and dissemination.
PCORI is a nonprofit organization with a mission to fund patient-centered CER designed to provide patients and those who care for them with evidence to make better-informed healthcare decisions.
To learn more, contact the research team at leaf-bpd@yale.edu.