Stakeholders' Perspectives on Stakeholder-engaged Research (SER): Strategies to Operationalize Patient-centered...

US federal funding agencies increasingly incentivize stakeholder-engaged research which represents a paradigm shift toward incorporating a range of stakeholders in research design, conduct, and dissemination.

We use qualitative methods to capture experience-based recommendations on how to operationalize 4 Patient-Centered Outcomes Research (PCOR) principles in stakeholder-engaged research, specifically: (1) reciprocal relationships; (2) colearning; (3) partnership; and (4) trust, transparency, and honesty.

We conducted semistructured interviews with members of a stakeholder panel who participated in a 2-year comparative effectiveness study of cholesterol screening and treatment among young adults.

Participants included 8 young adults and parent panelists and 11 professional panelists (clinicians, researchers, policy developers, and disseminators).

The interview guide included questions about the 4 PCOR principles and queried preferred strategies to attain them. Interview transcripts were analyzed using an a priori and emergent coding structure.

Participants provided strategies to promote the 4 PCOR principles. Although some stakeholder-identified strategies were complementary, others conflicted due to (1) competing ideologies identified among the principles, and (2) distinct stakeholder preferences. Illustrative of competing ideologies, participants simultaneously preferred receiving relevant articles before calls (to facilitate colearning) but also minimal outside reading (to achieve partnership). Illustrative of distinct stakeholder preferences, young adult and parent panelists generally preferred calls to occur on weekends/evenings, whereas professional panelists preferred mid-week work hours.

Our exploratory study provides stakeholder-identified strategies to achieve the 4 PCOR principles, and demonstrates the need to identify, acknowledge, and address potentially conflicting strategies due to the potential for competing ideologies or variation in stakeholder preferences.