Project Summary

According to the Depression and Bipolar Support Alliance (DBSA), mood disorders affect over 21 million people in the United States. There is great interest in exploring better treatments, but knowledge gaps still exist. One factor is that many studies are planned and led by researchers, with little involvement from individuals with lived experience (i.e., “peers”). In 2018, DBSA conducted a survey of 6,400 peers and found that outcomes they viewed as important (e.g., wellness) did not match the deficit-based approach often used (e.g., focusing on symptom reduction). A partnership approach in which all stakeholders participate in each phase of research is a clear strategy for increasing the relevance of research and outcomes; however, there are challenges to meaningful collaboration between researchers and peers.

The Institute for Patient- and Family-Centered Care (IPFCC) is partnering with DBSA on this project to plan and facilitate a convening that will result in a better understanding of peer priorities for comparative effectiveness research (CER) on mood disorders, identification of strengths and potential gaps in currently funded CER, and future research strongly informed by peers. Broadly, this supports PCORI’s vision that “patients and the public have information they can use to make decisions that reflect their desired health outcomes.” Specific objectives are:

Aim 1: Amplify the voice of peers in mood disorder CER. Priorities and themes generated from peers via DBSA’s Supporting Wellness initiative will be discussed with convening participants (researchers, clinicians, advocates, peer partners) to foster a more complete understanding of peer priorities for research.

Aim 2: Develop recommendations for ways in which future CER studies can more fully address peer priorities. The project team will create a crosswalk of peer priorities to PCORI CER projects on mood disorders. Participants will use this as a framework to discuss gaps and opportunities for mood disorder CER.

Aim 3: Promote collaborative relationships among stakeholders to increase meaningful engagement of peer partners in CER. Convening participants will be selected and invited based on expertise, willingness, and ability to engage in and/or foster future partnerships with peer partners in conducting and disseminating mood disorder CER.

Project activities include:

  • Create a project advisory committee consisting of peers, researchers, and clinicians to inform all activities
  • Review PCORI database; map research with peer priorities from DBSA research findings
  • Plan/facilitate a one-day convening in Chicago at DBSA’s headquarters with IPFCC and DBSA facilitators and 25 participants (i.e., peers, advocates, researchers, and clinicians)
  • Develop and disseminate two key resources—a lay convening summary and a guidance document—summarizing themes, recommendations, and actionable steps discussed at the convening.

Outcomes include improved knowledge of PCORI mood disorder CER, identification of opportunities for future peer-engaged CER, and understanding of how to engage peers (or partner as a peer) in CER. IPFCC is committed to the meaningful engagement of peers in this project. As an advocacy organization with peers on staff, DBSA’s involvement ensures co-design of all project stages with peer partners. The convening will include researchers, clinicians, and advocates, and at least 30 percent of participants will be individuals with lived experience.

Engagement Resources

Project Information

Pam Dardess, MPH
Institute for Patient- and Family-Centered Care
$99,983

Key Dates

14 months
2020

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Project Status
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: September 9, 2022