At a community forum in November 2015, melanoma patients and their caregivers shared anecdotes, such as: “Melanoma doesn’t always look black and ugly like the posters in doctors’ offices,” and, “Once you hear the words ‘you have cancer,’ it becomes impossible to hear anything else.” Over the past two years, our team—co-led by a melanoma survivor from SolSurvivors Oregon and researchers from Oregon Health & Science University (OHSU)—has identified a list of themes from which a comparative effectiveness research (CER) question will be selected; established a 10-member, patient-run community engagement committee that facilitates the co-leadership of this project; and identified academic collaborators experienced in proposal development who value the inclusion of the patient voice in the research process.
In Tier III, we propose to 1) grow the capacity of SolSurvivors and OHSU to jointly conduct CER, 2) collaboratively develop a responsive proposal to a PCORI Request for Proposals on a topic of interest to our patient community, and 3) develop a comprehensive communications plan to disseminate progress and research findings to stakeholders. We are excited to use the Tier III process to continue developing our shared infrastructure to ultimately conduct research that makes a difference in the lives of melanoma survivors and their families.
VIDEO (below): Developing an Infrastructure for Patient-Centered Melanoma Research
Pipeline to Proposal awardee talks about how her proposal for melanoma research began and what has been achieved so far.