Quick tips for engaging patient stakeholders in research

☐ Reach out to national or community-based nonprofit organizations, colleagues, or the office of community outreach at your institution for direction and input on identifying stakeholders.

☐ Reach out early and often in the research cycle to advocacy groups and community-based organizations for assistance.

☐ Provide patient stakeholders with sufficient information and advance notice (e.g., weeks, not days) so that they can make an informed decision about their participation and make meaningful contributions to your research project.

☐ Share this document with your study coordinator or the person who will be coordinating communications with your patient stakeholders. 

☐ Provide plain language information and communications for all research efforts that involve patients.

☐ Provide a clear timeline and list of roles and expectations of patient stakeholders.

☐ Include compensation for patient stakeholders’ time and expertise and reimbursement for their transportation/travel. The level of compensation may vary based on the type of stakeholder you are engaging. Make sure that stakeholders understand the steps they need to take to obtain compensation. If possible, provide administrative support to help them obtain a vendor number, prepare an invoice or complete any other administrative requirements.

☐ Inform patient stakeholders of project updates and outcomes (e.g., funding decisions, changes in scope or timeline, research outcomes). Consider them as part of your research team.

☐ Acknowledge and thank the contributions of all patient stakeholders (including participants) in publications and presentations

View or download the complete Guide to Engaging Patient and Community Stakeholders.


Researcher Tip Sheet Sponsored By:

Supported by a cooperative agreement from the
Patient Centered Outcomes Research Institute: PCORI EAIN-00055