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

So, I'm in a long-distance relationship

Me and Tim before he moved to SF earlier this year.

Three years ago, when I first started dating Tim, my biggest fear was that I'd fall for him and then he'd leave. Not long before we met, he had moved to Portland to be a supply chain analyst for a large tech company. Much like I was in my early 20s, he was uber-ambitious and willing to relocate just about anywhere if the job was right. Surprisingly, he stuck around for a while--or at least long enough to become an integral part of my day-to-day life. Imagine my chagrin when he came to me last April and told me he'd been offered the opportunity to move to San Francisco ($#&@!^#@#$).

He asked what I thought he should do. Take the job. Duh. It's a fantastic career move, I told him. Plus, he had no reason to stay here except for... er... me. My Portland roots, unlike his, are deep. I knew that pursuing this promotion would make him happy, so I chose to support it 100 percent.

He accepted the job, but then weeks turned into months and the move itself kept getting postponed. While I'm not one to complain, the planner in me kept wondering when he was actually going to leave.

If you're like me, you often take more pleasure or pain in the anticipation of an event than the event or situation itself. Not surisingly, I spent much of those nine months freaking out over a situation I had absolutely no control over, probably to the detriment of that time we did have left together living in the same place.

The two of us at a friend's wedding over the summer.

When he left in late January it was difficult but not unbearable. I spent 12+ hours helping him sort, fold clothes, and pack up his U-Haul. By the end, we were both a bit delusional, but it was nice to spend those last few hours together. It didn't feel like he was saying goodbye permanently because I knew I'd see him again in less than a month.

In all honesty, those first few weeks sucked. I felt discouraged and completely lost. I found myself googling "how to survive a long-distance relationship" the way I google things like "how long should I boil eggs?" and "how do I contour my cheekbones?" He was the one still living out of a suitcase, what right did I have to be worried about the current state of affairs?

Clearly, it's only March, and I'm sure I've only scratched the surface of how to truly survive a long-distance relationship. I've had more emotional ups and downs in the past eight weeks than I did my junior year of high school, but I'm hopeful and open-minded. Tim will be visiting me once a month, and after I get back from Australia, I plan to do the same. I'm learning how to be patient, how to be more forthcoming about my feelings, and to not take everything so darn seriously.