What is a research advocate?

Research advocates are volunteers with a personal connection to cancer who are passionate about helping translate research findings into meaningful outcomes for patients and their families. The primary role of a research advocate is to represent the collective patient perspective, or the disease experiences of many patients, in the research process. Through this lens, advocates support researchers by providing feedback on grant applications, participating on advisory committees, writing letters of support, and other projects.

Previous accomplishments from the Knight Scientific Research Advocates include:

• Supporting grant applications to organizations such as Susan G. Komen, the Department of Defense, the V Foundation, and Stand Up to Cancer
• Participating in early brainstorming meetings for clinical trials
• Presenting at graduate student seminars and community events on behalf of the program
• Serving on planning committees for breast cancer and melanoma patient symposia

Get involved in cancer research advocacy

To become a Knight Scientific Research Advocate, volunteers complete OHSU Volunteer Services registration; receive training on research funding and grant writing; attend seminars that provide an overview on various topics including cancer biology, clinical trials, and cancer prevention and control; and are paired with an experienced advocate mentor. Advocates also have opportunities to participate in local and national scientific meetings on behalf of OHSU.

Eligibility criteria

Knight Scientific Research Advocates represent a variety of disease areas, and come from a variety of different professional backgrounds. Periodically, we recruit new volunteers to complete training and join our program.

To become a Knight Scientific Research Advocate, individuals must:

• Have personal experience with cancer (as a patient, caregiver, or as an individual at high risk).
• Be able to share the collective patient perspective with Knight Cancer Institute researchers and clinicians.
• Be willing to volunteer at least 5 hours a month to the program for two years, including participating in quarterly group meetings, email discussions, and being available to consult on projects on an ad hoc basis.
• Excellent written and verbal communication skills, including proficiency with email and Microsoft Office.

Ideal qualifications:

• Demonstrated track record of involvement in community outreach or research advocacy activities.
• Leadership or volunteer experience with relevant patient advocacy organizations.
• Available to attend meetings on-campus at OHSU in Downtown Portland.

Advocacy for cancer researchers

Knight Scientific Research Advocates are available to work with Knight Cancer Institute faculty, staff, and students on research grant applications, developing lay abstracts, clinical trial design, and dissemination of research findings. 

To be matched with an advocate, send a short description of your project to knightadvocates@ohsu.edu. Please allow at least four weeks' notice to be matched with an advocate.

Frequently Asked Questions

Why should I work with a research advocate?
Funders like Susan G. Komen and the Department of Defense are increasingly requiring advocate or "consumer" involvement in the design and dissemination of research. In addition to fulfilling requirements from funders, advocates can bring fresh perspectives to challenging problems, can help you communicate to lay audiences, and most importantly, serve as a reminder for the of the long-term impact of your research findings.

How are advocates qualified to help?
Advocates bring a variety of skills and life experiences to their roles. Even outside of the Knight Scientific Research Advocates program, they have reviewed grant proposals, participated in OHSU Knight Cancer Institute clinical trials, and have acted as advocates for other cancer-related groups. In addition, many advocates have prior education and experience working with medical organizations that complement the training and skills they received at OHSU.

Are the Knight Scientific Research Advocates trained and vetted?
Yes. All advocates have an OHSU volunteer badge from Research and Academic Volunteer Services This badge signifies that they have passed a background check, signed confidentiality forms and completed Big Brain trainings. The advocates also completed a six-month training program, during which they attended seminars lead by OHSU faculty and staff.

How can I help get the most out of my experience with an advocate?
Engaging advocates as early as possible in the project planning process benefits both advocates and researchers. Begin with an introductory meeting to get to know one another and review the scope of the project. Researchers should explain their projects to the advocates, actively solicit input, and work to build a rapport throughout the process. Don't be afraid to get into the details of your science! Just remember: Advocates are volunteers, not paid staff, so they may be unable to respond to requests as quickly as your research colleagues. If you're using a research advocate for the first time, the Scientific Research Advocates program manager is available to meet with you to strategize how to best engage with an advocate on your project. Email knightadvocates@ohsu.edu to set up an appointment. 

Do you have boilerplate language about the Scientific Advocates Program I can use in my grant application?
Yes. Email knightadvocates@ohsu.edu to obtain boilerplate language for your proposal.

Resources

• Research Advocacy at NCI
• Research Advocacy 101