Patient-Centered Research

If you had five minutes to sit down with a researcher, what would you share with them? What would you ask them to study?

In early 2014, SolSurvivors was one of 30 organizations to receive a Pipeline to Proposal award from the Patient-Centered Outcomes Research Institute. Pipeline to Proposal Awards enable individuals and groups that are not typically involved in research to develop the means to produce community-led funding proposals focused on patient-centered research. Funding from this award, which has totaled $90,000 the past three years, has been used to build community partnerships, develop research capacity, and identify unmet community needs that will later become a large-scale research project.

The primary goal during Year 1 was to begin building an “army” to attack melanoma prevention from new angles and perspectives. Our greatest accomplishment during the nine-month award period was to support the launch of the Melanoma Community Registry at Oregon Health & Science University (OHSU). Patients contributed to the creation of this registry by participating in brainstorming meetings, drafting text for recruitment materials, reviewing informed consent language, appearing in TV and newspaper articles promoting the registry, promoting the registry at community events such as the Portland Melanoma Walk, and cost-sharing IT development.

In Year 2, SolSurvivors hosted a Melanoma Community Research Forum at OHSU, where participants learned about family history and melanoma risk as well as recent advances in melanoma treatment. Attendees also had a unique opportunity to participate in small group discussions to help shape future research projects. Through this process, we identified a number of key themes of interest to of local melanoma community, and are actively partnering with OHSU researchers to translate those ideas into research questions.

We are excited that we have just received an additional $50,000 grant for year three to develop a research study that reflects the needs and interests of melanoma patients and their families.

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.

Below is a video explaining the project: