Portland-based patient group receives $50,000 to partner with researchers on melanoma study

A team of community members and researchers, led by Katie Wilkes, founder of SolSurvivors Oregon, has been selected to receive $50,000 from the Patient-Centered Outcomes Research Institute (PCORI) to develop a research study that reflects the needs and interests of melanoma patients and their families.

The award comes from PCORI’s Pipeline to Proposal program, which enables individuals and groups who are not typically involved in the scientific research process to develop partnerships with researchers and spearhead the design of a patient-centered research proposal. Previously, SolSurvivors received $40,000 to build a Community Engagement Committee and support the OHSU Department of Dermatology on engagement activities related to the Melanoma Community Registry.

“When something like melanoma touches your life, you realize that if you’re not spending at least part of your time making a difference, you are wasting the life you are given,” said Robin Zimmerman, a member of the project team who became involved with SolSurvivors after losing his wife to melanoma in 2008.

Last fall, the project team jointly hosted a Melanoma Community Research Forum, where over 90 participants gathered in Portland and Bend to learn about the latest melanoma research and participate in small-group discussions about their experience with melanoma. Themes identified during the event are being used to shape a collaborative research project, as well as a community event to be held in November 2016.

For more information, please contact info@solsurvivorsusa.org.


About SolSurvivors Oregon 
SolSurvivors Oregon is a network of melanoma survivors, family, and friends who are passionate about transforming the way we prevent, diagnose, and treat melanoma. We coordinate community events to educate patients and their families, advocate for sun safety, and are working closely with researchers at OHSU to wage a War on Melanoma.

About PCORI 
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.

Supplemental materials

• View the project abstract 
• Watch a video about the project 

Recap: 2016 War on Skin Cancer Event

By Gale Pudlitzke
SolSurvivors Oregon, Community Engagement Committee Member

This past Saturday, May 21, SolSurvivors had the pleasure of participating in the OHSU War on Skin Cancer Event. How great it was to see all the survivors, family and friends there to support this cause. There was something for everyone --- a 5k walk/run, lectures, skin screening, blood and saliva donation for research, tables manned by researchers sharing new tools and information. And of course, the large gathering of beautiful redheads.

At the SolSurvivors table, we had the pleasure of talking to many melanoma survivors and family members who shared with us the age that they or their relative was diagnosed with melanoma. We plotted this information on a large display denoting the age, sex and survival of each. As we gathered more information, our graph showed some interesting results that lead to some great discussions with our visitors. We hope to travel with the display to different events this summer and see if our results change at all and of course, continue the conversations.

We thank everyone who stopped by our table. The stories your shared, information you provided and questions that you asked will help us move forward in strengthening our mission of making connections and providing support to melanoma survivors and their families and friends.

View more photos from the event on our Facebook page and don't forget to RSVP for our upcoming Melanoma Meetup on Sunday, June 12.

Themes and potential research questions identified at the 2015 Melanoma Community Research Forum

In November 2015, over 90 participants gathered in Portland and Bend, Ore., to attend SolSurvivors' first Melanoma Community Research Forum. After presentations by researchers on the latest in melanoma prevention and treatment, attendees were invited to join small-group discussions facilitated by trained volunteers. In the small group discussions, participants were asked questions such as: “If you had five minutes to sit down with a researcher, what would you want them to know about your experience with melanoma?”

Following the forum, members of the SolSurvivors Community Engagement Committee listened to recordings of the small group discussions and drafted summaries of themes. In early January, each committee member shared his or her summaries while our project coordinator wrote up themes on a virtual white board. Themes that came up more than once were highlighted, and we finished our meeting by discussing potential research questions that might address issues raised in the discussions.

Themes that we identified as issues of importance for attendees of our research forum in November include:

• Frustration with lack of public knowledge about the seriousness of melanoma 
• Lack of confidence in skin exams being conducted by self or provider 
• Lack of confidence in being able to detect recurrence 
• Missing information, resources, or tools to make informed decisions regarding care 
• Felt rushed during treatment 
• Importance of advocating for yourself, getting second opinions, or bringing a second person to medical appointments 
• Need more resources for emotional support and holistic wellness during and after treatment
• Conflicting information in the community about sun protection and sun safety 
• Desire to see more collaboration between health care providers and systems 

The SolSurvivors Community Engagement Committee shared this list of themes and potential research questions with OHSU researchers in late February. During that meeting, we discussed overlap between our community-identified needs and existing or future OHSU research initiatives. Our Community Engagement Committee plans to continue this discussion with OHSU, and will submit an application for continued funding from the Patient-Centered Outcomes Research Institute to explore possible solutions to the needs our community helped identify. We hope to host a follow-up forum in Fall 2016.

Download a copy of the full report.

Questions or comments? Contact us at info@solsurvivorsusa.org.

This #GivingTuesday, help fund education for melanoma patients and their families

Just in time for Giving Tuesday, SolSurvivors, our volunteer-operated 501(c)(3) nonprofit organization, accepts donations online via PayPal! Your generous donations help support resources such as:

• Educational events for melanoma patients and their families, such as the Melanoma Community Research Forum on Nov. 14, 2015 at Oregon Health & Science University
• Outreach in the community on the dangers of tanning
• Providing volunteers and supplies for melanoma awareness events
• Pilot funding for patient-centered melanoma research

Learn more about our work or contact us at info@solsurvivorsusa.org. 

Volunteers needed for Melanoma Community Research Forum, Nov. 14

On Saturday, Nov. 14, SolSurvivors Oregon will host a free Melanoma Community Research Forum in collaboration with the OHSU Department of Dermatology. During this half-day forum, participants will learn about family history and melanoma risk as well as recent advances in melanoma treatment. Participants will also have a unique opportunity to participate in small group discussions to share their experiences to help shape future research projects.

View a list of volunteers needed below, or visit our VolunteerSpot page to sign up.

Note-taker 
8:00am - 3:30pm
These volunteers will take notes during the small group discussions following the presentations. We will also have a digital recording device, so you will not be responsible for taking down every word, but it will be helpful to have someone write down themes and ideas or things that might not come across in an audio recording. More information will be provided at a meeting in person or by phone to talk about the details of the event. A volunteer orientation will take place before the start of the event. Hours:8AM-3:30PM
If you are interested or have questions, please contact Elizabeth Stoos at stoos@ohsu.edu or 503-418-9356.

Registration Table 
8:00am - 9:30am
These volunteers will check names off the registration list as attendees arrive, and hand out materials. A volunteer orientation one hour before the event will answer any questions that might come up about the agenda for the day, where refreshments or restrooms are located, etc. Hours: 8AM-9:30AM
If you are interested or have questions, please contact Elizabeth Stoos at stoos@ohsu.edu or 503-418-9356.

Welcoming and Directing 
8:00am - 3:00pm
These volunteers will help direct participants by placing signs in the building before the event, and greeting attendees at the entrance to the parking lot and the entrance to the building. You will still be able to participate, and will only have tasks before the event begins, and during break times. The event will be held at the new OHSU Collaborative Life Sciences Building on the South Waterfront, and since many people have not yet been to this building is can be very helpful to have a person to point them in the right direction. An orientation will start an hour before the event, to give you time to see the area and be familiar with where to direct participants.
 If you are interested or have questions, please contact Elizabeth Stoos at stoos@ohsu.edu or 503-418-9356.

Assistant Event Coordinator 
8:00am - 3:30pm
This volunteer will have an integral role assisting OHSU staff with any number of duties including directing and answering questions from participants, setting up catering, setting up signage, or other tasks that may come up. We are looking for someone who is flexible, energetic, willing to jump into any role and able to hit the ground running! More information will be provided at a pre-event meeting in person or by phone to talk about the details. A volunteer orientation will take place before the start of the event. Hours:8AM-3:30PM
If you are interested or have questions, please contact Elizabeth Stoos at stoos@ohsu.edu or 503-418-9356.

Save the date: Melanoma Community Research Forum, Nov. 14

Melanoma Community Research Forum 

Saturday, Nov. 14, 2015 from 9 a.m. to 3 p.m. 

Collaborative Life Sciences Building 

2730 S.W. Moody Avenue, Portland, OR  

Registration for this event is now closed. 

About the event
SolSurvivors Oregon, in collaboration with the OHSU Department of Dermatology, will host a free Melanoma Community Research Forum on Nov. 14. During this half-day forum, participants will learn about family history and melanoma risk as well as recent advances in melanoma treatment. Participants will also have a unique opportunity to participate in small group discussions to share their experiences to help shape future research projects.

It's free to participate, but registration is required. Please complete registration by Monday, Nov. 9 to help us plan for the appropriate number of participants. Free parking and lunch are also provided.

Who should attend?

• Melanoma patients and survivors
• Family members and friends
• Community members and health care professionals with an interest in melanoma and other skin cancers

Tentative agenda

9 to 9:30 a.m.	Registration
9:30 to 9:45 a.m.	Welcome and introduction Sancy Leachman, M.D., Ph.D., Chair of the Department of Dermatology, OHSU
9:45 to 10:30 a.m.	Family history and melanoma Lisa Aspinwall, Ph.D., Chair of the Department of Psychology at the University of Utah
10:30 to 11:15 a.m.	Melanoma treatment and clinical trials Matthew Taylor, M.D., Program Director, OHSU Knight Cancer Institute Phase 1 Clinical Trials
11:15 to 11:45 a.m.	Q&A
11:45 to 12:30 p.m.	Lunch
12:30 to 1:00 p.m	Partnering to change the state of melanoma in Oregon: Opportunities for patient-centered outcomes research Katie Wilkes, Founder- SolSurvivors Oregon
1 to 2 p.m.	Small group discussions
2 to 3 p.m.	Recap and closing remarks

Remote participation options
Thanks to your feedback from previous events, we have planned a remote option for participants in Bend, Oregon. Register for this option to view a live video stream of the presentations and participate in a facilitated group discussion. We will send you more information, including the location.

We will also post a recording of the presentations from each researcher on our website for anyone who is unable to attend.

Contact us
If you are interested in volunteering or learning more, please contact info@solsurvivorsusa.org. We will respond to your inquiry within 48 hours.

Portland Skin Cancer Research Expo and Melanoma Walk, May 30

There are two great opportunities to get involved and support melanoma research at this weekend's Aim at Melanoma Walk and OHSU Skin Cancer Research Expo taking place all day Saturday, May 30 at the South Waterfront in Portland, Oregon.

What: Sun safety education, free skin checks, opportunities to participate in melanoma research studies, and a free community walk!

When: Saturday, May 30, 2015. Skin Cancer Research Expo takes place from 10 a.m. to 3 p.m.; Melanoma Walk registration opens at 2 p.m. and opening ceremonies kick off at 3 p.m.
Where: Skin Cancer Research Expo takes place at the OHSU Center for Health and Healing, 3303 SW Bond Avenue; Melanoma Walk takes place right across the street at Elizabeth Caruthers Park, 3508 SW Moody Avenue.

Both events are FREE and open to the public. Look for SolSurvivors' exhibit on Patient-Centered Outcomes Research, and be sure to stop by and say hello!