Wanted: Patients’ perspectives on cancer research


Five years ago, Betty Booher’s husband was diagnosed with primary cancers in the colon and the pancreas and died at age 57. In the aftermath, she says, “It was important to me to find a way to join the fight against cancer.” Booher found a way by becoming a scientific research advocate at the OHSU Knight Cancer Institute.

Betty Booher, Scientific Research Advocate

Advocates support researchers by providing feedback on grant applications, participating on advisory committees, writing letters of support, and helping communicate research to the public.

“Betty is instrumental in contributing the patient perspective on our clinical-translational projects,” says Dove Keith, Ph.D., scientific program manager at the OHSU Brenden-Colson Center for Pancreatic Care. “She has direct family experience in dealing with pancreatic cancer and has fully shared her views and her interest with us throughout.”

Applications for the spring 2017 advocates cohort are due November 30, 2016.

Booher says she feels gratified to be able to add meaningfully to discussions with scientists, helping them to remember to think about questions that matter to people with cancer: Will participating in a clinical trial of an experimental treatment prevent me from going to work? Is a proposed treatment plan so rigorous that I won’t be able to fulfill my responsibilities at home such as caring for children or aging parents? Will these factors cause me to not seek treatment?

“Working with the other advocates showed me I wasn’t alone in wanting to give back to the OHSU community,” she says. “I am continually amazed and humbled by the dedication of the research and clinical teams—really, the whole staff.”

The Scientific Research Advocates program is now accepting applications for its spring 2017 training.

Knight Scientific Research Advocates come from a variety of different backgrounds. To participate, individuals must:

• Have personal experience with cancer (as a patient, caregiver, or as an individual at high risk).
• Be at least 24 months post-cancer diagnosis (if applicable).
• Be able to share the collective patient perspective with Knight Cancer Institute researchers and clinicians.
• Be willing to volunteer at least 5 hours per 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.
• Have excellent written and verbal communication skills, including proficiency with email and Microsoft Office.
Ideally, applicants should:
• Have a demonstrated track record of involvement in community outreach or research advocacy activities.
• Have leadership or volunteer experience with relevant patient advocacy organizations.
• Be available to attend meetings on-campus at OHSU in Downtown Portland.

Those selected will receive instruction in cancer biology, clinical trials, and cancer prevention and control. Advocates will be paired with experienced advocate mentors and will have opportunities to participate in local and national scientific meetings on behalf of OHSU.

To apply:

Applications for the spring 2017 advocates cohort are due November 30, 2016. There will be a webinar for interested applicants on Wednesday, October 26 at 6 p.m. RSVP to wilkes@ohsu.edu if you would like to attend.

Top photo: June Cooley, a scientific research advocate, speaking at a public forum on breast cancer screening, held as part of the 30th International Association for Breast Cancer Research Conference.