Portland-based patient group receives $50,000 to partner with researchers on melanoma study

A team of community members and researchers, led by Katie Wilkes, founder of SolSurvivors Oregon, has been selected to receive $50,000 from the Patient-Centered Outcomes Research Institute (PCORI) to develop a research study that reflects the needs and interests of melanoma patients and their families.

The award comes from PCORI’s Pipeline to Proposal program, which enables individuals and groups who are not typically involved in the scientific research process to develop partnerships with researchers and spearhead the design of a patient-centered research proposal. Previously, SolSurvivors received $40,000 to build a Community Engagement Committee and support the OHSU Department of Dermatology on engagement activities related to the Melanoma Community Registry.

“When something like melanoma touches your life, you realize that if you’re not spending at least part of your time making a difference, you are wasting the life you are given,” said Robin Zimmerman, a member of the project team who became involved with SolSurvivors after losing his wife to melanoma in 2008.

Last fall, the project team jointly hosted a Melanoma Community Research Forum, where over 90 participants gathered in Portland and Bend to learn about the latest melanoma research and participate in small-group discussions about their experience with melanoma. Themes identified during the event are being used to shape a collaborative research project, as well as a community event to be held in November 2016.

For more information, please contact info@solsurvivorsusa.org.

About SolSurvivors Oregon
SolSurvivors Oregon is a network of melanoma survivors, family, and friends who are passionate about transforming the way we prevent, diagnose, and treat melanoma. We coordinate community events to educate patients and their families, advocate for sun safety, and are working closely with researchers at OHSU to wage a War on Melanoma.

PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work.