Guidelines for Partnering with Research Advocates

Research Advocacy: Best Practices and Recommendations

Developed by the NCI Technology Research Advocacy Partnership (NTRAP) team, this set of recommendations was created to provide funded investigators from the Innovative Molecular Analysis Technologies (IMAT) and Informatics Technology for Cancer Research (ITCR) programs with best practices and considerations when partnering with research advocates. Specifically, the document highlights:

1. An understanding of and appreciation for the potential contributions of a research advocate as a research partner.
2. Recommendations on how to recruit advocates and recognize their relevant qualifications.
3. Best practices for setting expectations and assigning roles in your research setting.

Advocates have the potential to advance cancer research by contributing the unique perspective of patient communities. They often have a personal connection to cancer as a caregiver, patient, or survivor, and can represent the perspectives and priorities of a broader patient community. Research advocates are also vital bridges between the research community and the public, helping to preserve community interest, highlight investments, and share progress in cancer research.

How Advocates Contribute to Research Teams

• Help researchers address what’s most important to patients by providing perspective on patient needs, experiences, sensitivities, and concerns.
• Review drafts of grant applications to identify potential patient concerns and refine readability.
• Help identify and disseminate information about the most promising new technologies from the patient perspective.
• Assist in developing research questions, identifying patient-centered endpoints, assessing protocols, formulating development plans, and evaluating usability.
• Provide connections to potential testing populations (e.g., patient groups formed around specific biomarkers).
• Translate technical research into plain language, helping patients, clinicians, researchers, and the public better comprehend the research and its potential impact.
• Engage advocate partners in all phases of research (e.g., defining research questions, assessing potential impact on patient care, developing protocols, and disseminating results).

Qualifications of a Research Advocate

• Strong connection to patient community, often through a personal experience with cancer as a patient, survivor, or caregiver.
• Can represent the experience of many patients.
• Can effectively communicate a patient perspective relevant to the project.
• Is actively involved with the broader advocacy community and can disseminate research findings to a constituency.
• Has professional experience or interest in emerging novel cancer technologies and/or informatics tools.
• Has at least a fundamental understanding of basic science or the resources to learn.
• Awareness of and sensitivity to diversity, equity, and inclusion in basic science.

Recruiting a Research Advocate

• Start with your institution. Research clinicians may have relationships with patients who are interested in working alongside a research team.
• Include a role and funding for research advocate(s) in your grant application. Having a defined role on the team and funding for their time will increase the likelihood that they will participate (you may be able to allocate funds for research advocacy through your education and outreach budget).
• Reach out to local advocacy groups, professional societies, or other cancer research organizations that have a large network of partners; they may refer advocates or patient collaborators.
• Seek out opportunities at professional meetings and conferences (ASCO, AACR, etc.) to connect with advocates.
• Ask organizations if they train patients to be research advocates; this could be a resource for finding collaborators.
• Contact NCI’s Office of Advocacy Relations (OAR) for assistance. OAR can provide guidance and help direct you toward finding advocates to support your research efforts.

Role/Expectation Setting

• Set expectations at the onset of any partnership. Advocates will want to know how they can best work with you to accomplish your research aims.
• Work as partners to identify roles and responsibilities that reflect the advocate's strengths, interests, and capacity. Communicate this to all team members.
• Provide sufficient background before an activity/assignment to ensure advocates have the project-specific knowledge and tools to succeed.
• Establish a timeline for the duration of their participation and the expected level of time commitment.
• Connect with advocates at meetings during structured and unstructured times, providing them opportunities to express concerns or ask questions. Dedicated time for advocate input during research meetings will encourage their participation.
• Be explicit about any compensation and acknowledgment (honoraria/paid compensation, travel, parking, co-authorship, etc.), or other offerings. Advocates are grateful for recognition of their efforts.
• Include advocates early in your research discussions; their involvement can help shape your research and any potential barriers.
• Build a culture of mutual respect and collaboration between researchers and advocates.

NTRAP is grateful for the research being carried out by IMAT and ITCR-funded investigators who develop novel tools and create new possibilities for the end-user, the cancer patient. Research advocates are spurred by innovation and the promise of hope and want to play a critical role in advancing research. Adopting some of the principles outlined above, you are helping to ensure a successful collaboration between researchers and advocates and, ultimately, life-changing research outcomes for patients.