Pragmatic Considerations in Incorporating Stakeholder Engagement Into a Palliative Care Transitions Study

Area of Science:

• Health Services Research
• Clinical Trials
• Patient Engagement

Background:

• Stakeholder involvement enhances health care research development, processes, and dissemination.
• Developing methods and validated tools for evaluating stakeholder engagement is an emerging area of study.

Purpose of the Study:

• Describe the methodology for engaging a Study Advisory Committee (SAC) in health care research.
• Report on the use of a stakeholder engagement survey to measure the level of engagement.

Main Methods:

• Recruited stakeholders with prior research experience to the SAC for a multicenter randomized control clinical trial.
• Conducted qualitative analysis of SAC meetings and annual quantitative evaluation using the Stakeholder Engagement Survey (developed by PCORI).

Main Results:

• The SAC included 18 members from patient/caregiver, advocacy, and payer groups, meeting quarterly and annually.
• The stakeholder engagement survey indicated improved engagement over time, alongside persistent challenges.

Conclusions:

• Meaningful stakeholder engagement contributed significantly to study design, patient recruitment, and preliminary analysis.
• The SAC model provides a framework for effective patient and public involvement in clinical research.