Getting survivors involved in the design of melanoma research: Our PCORI project advances to Tier 2

Great news to share! The project I've been working on in collaboration with Oregon Health & Science University and SolSurvivors has been selected to advance to Tier 2 of PCORI's Pipeline to Proposals Program. Tier 2 awards provide up to $25,000 to help recipients strengthen community partnerships, develop research capacity, and hone a comparative effectiveness question that could become the basis of a large-scale research project.

Pipeline to Proposal Awards enable individuals and groups that are not typically involved in research (like me!) to develop the means to produce community-led funding proposals focused on patient-centered comparative effectiveness research. In 2014, I was part of the inaugural Tier 1 cohort of this program.

Our project, "Developing Infrastructure for Patient-Centered Melanoma Research," aims to involve patients and other critical stakeholders in the development of strategies for preventing and detecting melanoma at an earlier stage, thereby decreasing death rates. When melanomas are detected early, patients have a 98% five year survival rate, but if the cancer has spead to the lymph nodes and other parts of the body, survival rates drop to a mere 16%*. Because of its origins in the skin—where doctors and patients can see it—melanoma should be one of the most easily recognized and detectable of all cancers. Unfortunately, barriers still exist to early detection of melanoma. During Tier 1, we learned that many patients don’t know what to look for when conducting a skin self-exam. Other barriers to early detection and treatment may include a lack of knowledge that melanoma can be life-threatening, poor/no insurance coverage, lack of transportation/distance to a provider, and treatment by a doctor that lacked expertise in melanoma.

During Tier 1, we began building an “army” of volunteers 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. As of January 2015, the Melanoma Community Registry had 2,374 patients, 446 family members of patients, and 146 friends of patients signed up. As director of the project, I contributed 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, as well as cost-sharing IT development.

In this next phase, we plan to build upon the progress we made in Tier 1, with the ultimate goal of working toward a large-scale research study in collaboration with researchers at OHSU. Specifically, we plan to use surveys and focus groups to identify issues that are the most crucial to melanoma patients and those who care for them. We are also continuing to develop our network and would love to meet others with an interest in contributing to this effort. Want to get involved? Send me a note at info@solsurvivorsusa.org.

View this video to learn more:

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.

*National Cancer Institute SEER