What is the difference between patients and other stakeholders?
PCORI defines “patients” as persons with current or past experience of illness or injury, family members or other unpaid patient caregivers, or members of advocacy organizations that represent patients or caregivers. Stakeholder partners may include members of constituencies based on professional, rather than personal, experience. For example, these constituencies can include clinicians, purchasers, payers, industry, hospitals and health systems, policy makers, and training institutions. Some individuals may fit into several categories. For more information on how PCORI defines “stakeholders,” visit https://www.pcori.org/pcori-stakeholders.
Do stakeholders, as well as patients, have to be included in the Engagement Plan?
Yes. Other relevant stakeholders should be engaged as research partners. Applicants must explicitly identify each team member’s role in their proposal. Applicants are encouraged to include regional or national stakeholder groups, such as physician specialty groups, patient advocacy groups, large payers, or policy makers as meaningful team members, partners, or advisors in the project. Involving these types of stakeholders will help assure the continued implementation of the shared decision making approach beyond the immediate project, should it be successful. If applicants intend to exclude certain stakeholders, they should be explicit on why their perspectives are not relevant.