Stakeholders’ Perspectives on Stakeholder Engaged Research (SER): Strategies Promoting Patient-centered Outcomes Research principles in SER

• In Event: 334 - Section on Medical Sociology Paper Session. Patient, Stakeholder, and Community Engagement in Health Research

Abstract

Background
U.S. federal funding agencies increasingly incentivize stakeholder engaged research (SER), which represents a paradigm shift toward incorporating a range of stakeholders in research design, conduct, and dissemination.

Objectives
We employ qualitative methods to capture experience-based recommendations on how to operationalize four Patient-Centered Outcomes Research (PCOR) principles in SER, specifically (1) reciprocal relationships, (2) co-learning, (3) partnership, and (4) trust, transparency and honesty.

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

Participants included eight young adults and parent stakeholders and 11 professional panel members.

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

Results
Participants provided strategies to promote the four PCOR principles. While 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 co-learning) but also minimal outside reading (to achieve partnership). Illustrative of distinct stakeholder preferences, young adult and parent panel members generally preferred calls to occur on weekends/evenings while professional panel members preferred mid-week work hours.

Conclusions
Our exploratory study provides stakeholder-identified strategies to achieve the four PCOR principles, and highlights the need to identify, acknowledge and address potentially conflicting preferences across stakeholders and over the course of the study.

Authors

• Thomas Ives Mackie, School of Public Health, Rutgers University

• Radley Christopher Sheldrick, Tufts Medical Center

• Sarah D. deFerranti, Boston Children's Hospital and Harvard University

• Tully Saunders, Tufts Medical Center

• Laurel K. Leslie, Tufts Medical Center; American Board of Pediatrics

• Erick G. Rojas, Rutgers University