What types of patient stakeholders do you need for your research?

Depending on your study needs, you may engage one or more of the following stakeholders.

Community members

Stakeholders who are members of the community you are studying may include:

• Patients
• Relatives or family members
• Caregivers
• People who share a set of circumstances, challenges or conditions

These individuals typically do not have formal scientific training, although many may have researched the topic, condition or challenge of interest. They are subject matter experts based on their lived experiences.

Trained advocates

These individuals often represent stakeholders from one of the categories of listed above. They may have received research advocacy training through a nonprofit organization, clinical research program or funding agency (e.g., the Department of Defense Congressionally Directed Medical Research Program) to learn more about the research enterprise, their disease or condition and how patients can engage in research. Or, they may have gained expertise from contributing to multiple research opportunities. They may also have relevant professional experience that can improve the study’s success.
 

Advocacy groups and community-based organizations

Many organizations have both interest and expertise in assisting investigators with research design, grant applications, participant recruitment and results dissemination. Some offer training programs to help people who do not have a scientific background participate in the research process. These organization can often match you to qualified research advocates or constituents who represent the desired participant community to review patient-facing materials or participate on research study teams. Some organization have specific programs or tools that assist with research study enrollment and dissemination of research study findings.

Engage Patients

Table of roles that patient community stakeholders may play at each phase of the research cycle

Project need	Patients, caregivers & public	Trained advocate	Advocacy group or community based organizations
Identify research gaps	Provide personal and individual perspective.	Provide insight into individual and community perspective.	Provide a range of community perspectives or access to multiple patients to provide insights or feedback.
Review study design, materials and communications	Provide individual perspective on understandability and acceptability of communications. Provide input to ensure cultural competence.	May be trained to spot gaps in understanding, access to, or protections and barriers to participation. May be trained to develop recruitment strategies and materials to engage diverse patient groups.	Provide a range of community perspectives or access to multiple patients to provide insights or feedback. Spot gaps in understanding, access or protections and barriers to participation. Provide guidance for cultural competence.
Assist with study recruitment and enrolling	Provide testimonials and personal experiences with clinical research. Provide outreach to a community, community-based organizations and trusted community leaders.	Provide testimonials and personal experiences with clinical research. Provide outreach to community, community-based organizations and trusted community leaders.	May have means for multi-channel, broad outreach, study promotion and patient matching. May have access to specific groups or populations. Are considered trusted leaders within the patient community.
Disseminate study results	Share study results with peers, community-based organizations and social networks. Inform their care providers about the study and results.	May have means for the  dissemination of results through ties to organizations and the community.	May have broad dissemination channels that reach patient, clinical care and policymaker stakeholders. Provide guidance for cultural competence.