Where do you find patient stakeholders?
Whether you are seeking a patient community member with no research experience, a seasoned advocate or professional engagement assistance, you should be able to find a patient stakeholder to meet your needs.
Here are some places to start:
- If your focus is hereditary cancer research, FORCE has a research advocate training program and can match you to community members affected by hereditary cancer who are eager to participate in the research process.
- Reach out to research-oriented national or community-based nonprofit organizations.
- Your institution’s office of community outreach or engagement may be able to provide direction and input on identifying interested and engaged community stakeholders.
- Your colleagues may have recommendations for advocates who have assisted them with similar projects.
- Contact professional societies in the area of your research. They may have advocacy contacts or advocacy branch that can recommend patient stakeholders.
- Contact the Patient Advocate Committees that are associated with the National Cancer Institute’s National Clinical Trials Network (NCTN) groups, listed in the resource section below.
Engage patient stakeholders as early as possible in your process to give them enough time to provide meaningful input.