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

Where did April go?

When life gets tough, I just need to remind myself: I climbed this!

I can't believe it's almost May. This month has been a blur. It probably seems like I've gone MIA, but I've just been really, really busy with melanoma-related activities. Earlier this month, I traveled to Utah for a meeting with SolSurvivors, a patient advocacy organization based in Salt Lake City. (This is the group I'm working with on the PCORI-funded project.) Then today, I had a chance to meet with this guy in Seattle. Everyone I've met since I began working on this project has been incredibly receptive to the idea of involving patients in the design of cancer research and outreach projects. There's still lots of details up in the air and lots to figure out, but I'm feeling very confident about being able to engage more laypeople in the melanoma research process going forward--and that's incredibly, incredibly exciting to me.

Meanwhile, it's crunch time as we prepare for the Northwest Melanoma Walk on May 31. I've connected with several new partners for the the walk this year, so it'll be interesting to see how the event evolves from last year.

Protecting my skin from the hot Cabo sun.

On a slightly unrelated note, this month I also accomplished something I never thought would be possible: I turned off my iPhone for five full days while I was in Mexico.

Coming from someone who checks her email at least 50 times a day and practically cuddles her phone when she goes to sleep, I was expecting to go through withdrawals. But, surprisingly, the company I kept while I was vacationing was enough to distract me from that constant nagging feeling that I needed to check my email. I suppose the margaritas and shrimp tacos didn't hurt either.

Disconnecting during an incredibly busy time--both at work and for my patient advocacy activities--was oddly liberating. I embraced relaxation to the point where I barely felt like myself anymore. I danced until 4 a.m. and climbed a huge mountain of rocks (see photo above), even though I'm ordinarily scared of heights. I heard people talk about their tans and sunburns, and I barely batted an eye.

My amigas!

I think one of my strengths as a human being is my ability to be empathetic and compassionate to others. But let's be real: caring is exhausting. It was nice to know that I could almost "turn it off" for a few days, just so that I could get a little down time.

Coming back to work on Monday was a bit of a rude wake up call. My inbox was full and I had several major deadlines to meet. Regardless, Cabo '14 will go down as one of the best trips ever. Crazy adventures with great friends--and I was finally able to chill out enough to enjoy it. Definitely just what I needed to get me through my busy season.

Big news: I've been approved for PCORI funding!

As some of you know, I've served as a lay reviewer for the Patient-Centered Outcomes Research Institute since last spring. It's been an incredible learning experience that has empowered me to reach out to experts in melanoma research to see what I can do as a patient to improve melanoma survival rates.

Today, I found out that the project I've been working on with researchers at Oregon Health & Science University and the founders of SolSurvivors Utah has been approved for a "Pipeline to Proposal" award from PCORI. The project is one of 30 proposals approved for these seed funds intended to build communities interested in advancing patient- and stakeholder-driven health research.

Our project, "Developing Infrastructure for Patient-Centered Melanoma Research," unites patients from Oregon and Utah—two Western states with abnormally high melanoma rates—with researchers from Oregon Health & Science University and the University of Utah. Ultimately, our goal is to find a way to engage significant numbers of patients and caregivers in research design, project governance, and dissemination of findings. Be sure to check back this spring to learn more about how you can become involved!

This award is among the first to be made through PCORI’s new Eugene Washington PCORI Engagement Awards program. These Tier I Pipeline to Proposal awards provide seed funds to encourage the development of partnerships and research project ideas among individuals and groups who want to take an active role in health research but may not have opportunities to do so.

Our project was selected by review panels made up of patients, stakeholders, and researchers. All projects are approved pending a programmatic and budget review by PCORI staff and negotiation of a formal contract.

PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed health care decisions. PCORI's expanding portfolio now includes 279 patient-centered studies and initiatives. PCORI has awarded a total of $464.4 million since it began funding patient-centered comparative effectiveness research in 2012. For more information about PCORI, visit http://www.pcori.org.

Miley Cyrus strips down to promote skin cancer awareness

In case you missed it, Miley Cyrus is running around naked again, but this time for a worthy cause: melanoma research. Miley is the newest face of Marc Jacob's "Protect the skin you're in" campaign, which benefits the NYU Skin Cancer Institute. While I probably won't be rushing out to buy a Miley shirt any time soon, I love these tees, and there are plenty of other celebs to choose from (Heidi Klum, Victoria Beckham, and Naomi Campbell just to name a few).

What do you think of these shirts? Would you wear one?