RSVP today for our Melanoma Community Research Forum, Jan. 21

SolSurvivors Oregon will be hosting a Melanoma Community Research Forum in collaboration with AIM at Melanoma and the OHSU Department of Dermatology. Join us for a FREE event about melanoma treatment advances, the future direction of clinical trials, and how we're responding to the needs of our community with a patient-centered research project. Plus, there will be plenty of opportunities to join the conversation and find out how you can get more involved!

Melanoma Community Research Forum
Saturday, Jan. 21, 2017
8:30 a.m. to 1 p.m.

LOCATIONS

Portland
Collaborative Life Sciences Building
2730 SW Moody Ave, Portland, OR 97201

Bend
Knight Cancer Institute Regional Outreach Office
963 SW Simpson Ave, Suite 100, Bend, OR 97702

Corvallis
Samaritan Pastega Regional Cancer Center
501 NW Elks Drive, Corvallis, OR 97330

Watch from your computer at home!
Join us for the live streaming of the event starting at 9:00 a.m. PST by clicking here.

 

Event highlights

  • Special guest speaker: Omid Hamid, M.D., Director of the Melanoma Center, The Angeles Clinic and Research Institute
  • Learn how we’re turning patient-identified needs into a research project about self-skin exams
  • Audience Q&A with doctors from OHSU, Providence and more
  • Networking with melanoma survivors and friends
  • Free lunch and parking! 

Hosted by SolSurvivors Oregon and AIM at Melanoma, in collaboration with the OHSU Department of Dermatology.

Questions? Call 916-706-0599 or email info@wearesolsurvivors.org.

Volunteers needed for Melanoma Forum on Jan. 21

Volunteers are needed for the Melanoma Community Research Forum taking place on Saturday, Jan. 21, 2017 at the Collaborative Life Sciences Building in Downtown, Portland.  Volunteer jobs include:

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. 

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.

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.

If you are interested or have questions about any of these positions, please contact Faith Tirrell at tirrell@ohsu.edu or 503-418-9314.

Please pass this information along to anyone who you think may be interested. And don't forget to RSVP for the event!

A patient’s perspective on a patient-centered conference: Recap of #PCORI2016 (Part 2)

By Katie Wilkes, SolSurvivors Oregon
Read Katie's Day 1 recap

Panelists discuss how to recruit participants for patient-centered clinical trials.

Panelists discuss how to recruit participants for patient-centered clinical trials.

Day 2

On day 2 of the Patient-Centered Outcomes Research Institute (PCORI) annual meeting, I was excited to attend the breakout session on planning for successful recruitment in patient-centered clinical trials. As partners in the research process, patients and community organizations can play an important role in recruiting for clinical trials. We might share information about specific trials with our networks, or we can advise researchers on recruitment strategies and patient-friendly informed consent language.

The session kicked off with a presentation by Mary Woolley, head of Research!America. I was thrilled to see her speak in person because aside from being very accomplished, her organization does important work raising public and policymaker awareness about the importance of medical research. Research!America conducts public opinion surveys on clinical trials and has found that although the vast majority of Americans have not participated in a research study, many of them would consider participating if they were asked to do so by someone they trust. Alarmingly, a large percentage of the population believes that you can be enrolled in a clinical trial without your knowledge, which is very much untrue. Let's make people who participate in clinical trials as admired as those who donate blood, Mary Woolley said.

Another presenter during the clinical trials session described his PCORI-funded project that is comparing the effectiveness of antibiotics vs. surgery for appendicitis. Can you imagine being able to avoid surgery if you suddenly came down with appendicitis? This seems completely unheard of. And yet research in Europe suggests that antibiotics could be a viable alternative to surgery for these patients. The project's leader, Dr. David Flum, said this is exactly the type of "big question" that PCORI aims to solve. One that has a real impact on the health and quality of life of large numbers of people.

Conference attendees line up to ask questions at the Friday afternoon plenary panel.

Conference attendees line up to ask questions at the Friday afternoon plenary panel.

Later in the day, the afternoon plenary session highlighted some of the unique work PCORI is funding for people with multiple chronic conditions. Most clinical trials have strict eligibility criteria and this tends to exclude people who suffer from more than one disease or condition. For example, you may not be eligible to participate in a particular cancer clinical trial if you've already been diagnosed with high blood pressure. Designing trials for patients with multiple conditions is not without its challenges, but it's addressing a real need that was eloquently articulated by panelist Anna Renault.

On Friday, I also had a chance to hear from a panel of editors representing a variety of scientific journals including JAMA, The BMJ, and PLOS Medicine. During this session, I was pleased to hear about the innovative ways The BMJ is integrating the patient perspective into its science-focused publication. Of course, PCORI-funded projects are required to think beyond just scientific journals for sharing the results of their work, but it was helpful to learn more about what each of these journals is looking for, and how I might be able to support my research partners on publishing the results of our study in the future.

Day 2 concluded with a "Tweet Up," where I had a chance to meet face-to-face with some of the people I'd been chatting with online throughout days 1 and 2. Never underestimate the power of connecting with fellow conference attendees. You never know what you might learn!

A reminder from one of the presenters that we are part of something really, really big.

A reminder from one of the presenters that we are part of something really, really big.

Day 3

On the final day of the PCORI Annual Meeting, I participated in an all-day workshop called "Getting to know PCORI: From application to closeout." The purpose of this workshop, which PCORI has held in other cities as well, is to help potential applicants get a better understanding of what PCORI is looking for so that they can be better equipped to apply for funding.

The first step toward applying for PCORI funding is submitting a letter of intent. The letter of intent, also known as an LOI, describes a problem you are trying to solve and a high-level overview of how you plan to solve it. If program staff determine your idea fits within the parameters of their program, they'll invite you to submit a full, detailed proposal. Surprisingly, a large number of LOIs do not meet PCORI's minimum criteria. For this reason, it's important to check with a program officer early in your planning process to make sure you're targeting the correct program.

The workshop continued with numerous other practical hints, including the importance of describing why you picked the comparators you did and demonstrating that you can hit the ground running on day one of your contract. Also, don't forget to work with the most up-to-date version of the LOI template on the PCORI website!

Conclusion and takeaways

Many of the major themes and takeaways I wrote about at the 2015 meeting held true at this year's conference as well. This year, though, as our Pipeline to Proposal team gets closer to submitting our LOI in early 2017, things seem to hit a bit closer to home.

Never in a million years did I imagine that I would play such a significant role in developing a melanoma research proposal--from helping choose the topic, to narrowing it down to three specific aims, to developing a robust community engagement strategy. I was inspired by all of the patient co-investigators who presented at the conference this year, and I hope I'll be among them in the future.

After spending almost three years in the Pipeline to Proposals program, I can say with certainty that our team has a significant competitive advantage when it comes to patient-centeredness and patient engagement. Yes, we're still learning, but patients and family members have been integrally involved in the process from start to finish. Will we succeed in obtaining larger-scale PCORI funding? That's for the peer reviewers to decide, but I'm hopeful. At the end of the day, regardless of what happens, I'm thankful to have been part of the process, and I continue to leave every PCORI conference feeling energized and inspired.

Want to learn more about our planned application to PCORI in 2017? Join us at our Melanoma Community Research Forum on Saturday, Jan. 21, 2017 from 8:30 a.m. to 1 p.m. We'll be meeting in Portland, Bend, and Corvallis, Oregon. Learn more.

This post originally appeared on PrettyinPale.org.

A patient’s perspective on a patient-centered conference: Recap of #PCORI2016

By Katie Wilkes, SolSurvivors Oregon

Our view from the PCORI Annual Meeting in National Harbor, M.D.

Our view from the PCORI Annual Meeting in National Harbor, M.D.

For the past two years, I’ve been fortunate to receive a scholarship to attend the Patient-Centered Outcomes Research Institute (PCORI) annual meeting in Washington, D.C. This conference, which started in 2015, brings together over 1,000 patients, caregivers, researchers, clinicians, policy makers, insurers and other health care stakeholders in one room to figure out how we can work together to improve the health and well-being of our communities. At PCORI meetings, we spend a lot of time talking about how we can translate what we learn from clinical trials into the real world. In this spirit of openness and transparency, I wrote two posts on my personal blog in response to the 2015 PCORI Annual Meeting, half expecting no one would ever read them. I had no idea how many people would end up reading those posts, including a number of staff members at PCORI and several of my friends at the Colorado Foundation for Public Health & the Environment!

At the close of the first day of PCORI’s 2016 annual meeting, I’m pleased to report that PCORI seems to be listening to to our feedback. Last year, several of us noted that we’d love to see more patients and caregivers during the conference’s plenary sessions. This year, Stephanie Buxhoeveden gave a phenomenal opening keynote chronicling her journey from ambitious nursing student to MS patient to nurse for MS patients. While we often characterize ourselves as either patients or researchers, her talk was a great reminder that many of us wear multiple hats. In fact, I would argue that those of us who wear multiple hats--whether it’s clinician and researcher or patient and health care stakeholder--are inherently better at patient-centered research because we can draw from our diverse experiences and bridge the gap between disparate stakeholder groups. There was much Twitter chat about this topic throughout the conference, so I hope to see the "multiple hats" topic get more attention at future PCORI meetings.

Proudly representing my SolSurvivors team at the PCORI Annual Meeting.

Proudly representing my SolSurvivors team at the PCORI Annual Meeting.

The panel discussion following Stephanie’s talk included individuals representing various perspectives--a self-described “good-looking Mexican guy in a wheelchair,” an advocate for family caregivers, a legislative advocate, a patient co-investigator, and a nurse navigator. Each panelist was an articulate, insightful contributor, and while plenary panels tend to be more theoretical than practical, I found the conversation had a few solid takeaways, including:

  • We need to educate patients about clinical trials before they’re diagnosed with a disease. 
  • It’s not enough to educate patients on how to work with researchers. We need to educate (and incentivize!) researchers on how to best work with patient advocates. 
  • If you neglect the family caregiver, you’re creating another patient. 

Prior to Thursday’s plenary session, those of us who received a scholarship to attend the meeting were invited to participate in a pre-conference workshop at a neighboring conference center. This workshop included a variety of short presentations from PCORI staff members, funded researchers and patient partners, and others. During the workshop, we heard from PCORI’s Engagement Officer that some communities have a longstanding distrust of the health care system and medical research in general. Patient engagement can help build trust to breakthrough to those who have been underrepresented in research. Although there’s no “one size fits all” approach to engagement, the most successful partnerships do tend to have a few things in common. This includes trust, respect, authenticity, open communication, and a clear division of labor.

A snapshot of Thursday evening's plenary session.

A snapshot of Thursday evening's plenary session.

We also spent some time talking about how to build your social media presence as a patient advocate. This part of the presentation was a bit rudimentary for those of us who are already very active on social platforms, but it was important information to share with the group at large. Although there’s plenty of work I’ve done face-to-face, when it comes to melanoma advocacy, I’ve made a tremendous amount of connections sharing my story through this blog, Twitter, and on Facebook. There’s no way I would be nearly involved in outreach or research advocacy today if it weren’t for social media. For those who are new to social media, PCORI’s social strategist encouraged starting conversations with others you follow on social sites and adding your thoughts to existing discussions. Opening up in a public forum about your disease experience can be pretty unnerving, but in my own experience, other advocates and “influencers” tend to be pretty approachable and helpful for new folks who are just getting started.

The last presenter at the scholarship pre-conference session was Tony Coehlo, former U.S. Representative and sponsor of the Americans with Disabilities Act. Like many of the other presenters, Mr. Coehlo opened his talk by sharing his own experience as a patient, which ultimately lead to a very active political career. His story, like many of the others we heard throughout the day, was a great reminder to all of us that while the work we do can be really, really challenging, it’s important work, and if we’re ever going to see real change in the U.S. health care system, we’re the ones who need to make it happen.

Stay tuned for more on days 2 and 3!

This post originally appeared on PrettyinPale.org.

Melanoma Community Research Forum comes to Corvallis!

Great news for our friends in Benton County! We have just added a remote viewing party for January's Melanoma Community Research Forum at Samaritan Pastega Regional Medical Center in Corvallis, Oregon.

Join us at this FREE event to learn about melanoma treatment advances, the future direction of clinical trials, and how we're responding to the needs of our community with a patient-centered research project.

Hosted by SolSurvivors Oregon in collaboration with AIM at Melanoma and the OHSU Department of Dermatology

Presidents of the United States and Skin Cancer

By Robin Zimmerman, SolSurvivors Oregon

On the eve of this historic 2016 election, the people of the United States are seeking to choose who will be fit to serve as our nation’s 45th President.  With that responsibility, our President’s health has always been a concern of our nation and is closely monitored. Years of meticulous medical records have given us the ability to diagnose some diseases retrospectively.  Several of our presidents and their family members have been impacted by skin cancer and a few have had melanoma in particular.  Below are their stories of skin cancer. 

George Washington, 1732-1799

We all know he was our first president, serving from 1789-1797. Throughout his career he participated in the revolution and as a military leader and he was an industrious farmer and mule breeder. During his life he did suffer many different illnesses including tuberculosis, malaria, smallpox, and dysentery. In 1795 a “Carbuncle” grew on his face and some thought was a cancerous tumor and was quite likely melanoma. This could have also been caused from streptococcal or staphylococcal.  While this was not definitely melanoma, it is entirely possible our first President suffered from the disease.

Franklin D. Roosevelt, 1882-1945

The 32nd president took office in 1933 and served until 1945. He was struck with polio in 1921 causing him to lose the use of his legs. The images of him serving as president in a wheelchair are iconic and are still an inspiration to anyone dealing with a disability. Starting his presidency with his “New Deal” and then entering WWII after the attack on Pearl Harbor set him apart in history. In 1944 his health started deteriorating rapidly. He was fighting COPD, high blood pressure, and melanoma. The combination of all these took his life on April 12th, 1945.

James Earl (Jimmy) Carter, Born 1924

The 39th president took office in 1977 and served until 1981. His life after leaving office is filled with service to the citizens of the world. Having been a great supporter of Habitat for Humanity it is not uncommon for him to shown up at a house site working a full day just pounding nails. His Carter Center in Atlanta serves to advance human rights and alleviate human suffering.  On August 3rd of 2015 Carter underwent elective surgery to remove “a small mass” on his liver. The initial prognosis was good but on August 12th it was announced that the melanoma had metastasized. He began treatment with the immunotherapy drug pembrolizumab and radiation.  Presently President Carter remains stable but his physicians will continue to monitor his health.  

Ronald Wilson Reagan, 1911-2004

The 40th president took office in 1981 and served until 1989. Reagan was raised in a poor family in Illinois. He worked as a sports caster and moved to Hollywood. He has a great career in movies. He served as the president of the Screen Actors Guild before moving into politics. In July of 1987 President Reagan had a procedure to remove skin form the tip of his nose which was diagnosed as basal cell epithelioma. Later the president was addressing a group of protesters while having the bandage on his nose. He pointed to the bandage and described it as a “billboard” which says “Stay out of the sun”.

Maureen Reagan (Daughter of President Ronald Reagan) 1942-2001

Maureen was the first child of Ronald Reagan and his first wife Jane Wyman. She pursued acting in her youth and appeared with Elvis Presley in the movie “Kissin Cousins”. She spent time and energy in politics with support for candidate and a run for office herself. With her father’s Alzheimer’s she became an advocate and served as spokesperson and joined the board of directors of the Alzheimer’s Association. In 1997 she was diagnosed with melanoma and lost her battle 4 years later in August of 2001. 

Laura Lane Welch Bush (wife of George W. Bush) Born 1946

She was a second grade teacher and has a Masters Degree in Library Science. She married George Bush in 1978 a year after they met. She became First Lady in 2001 when her husband took office. She implemented many initiatives involving health, education, and literacy. In November of 2006 she had a malignant tumor removed from her shin. It was squamous cell carcinoma. This type of skin cancer is more aggressive then basal cell and can spread to other parts of the body. Since she caught her cancer early, no further treatment was necessary.

John Sidney McCain (Former Presidential Candidate and current US Senator) Born 1936

Senator McCain serves in the state of Arizona. He was the Republican nominee for president in 2008. He comes from a line of Naval officers and graduated from the Naval Academy in 1958. He flew ground attack aircraft from aircraft carriers. Narrowly having escaped death in a ship fire, he was later shot down over Hanoi and was a P.O.W. in Vietnam until 1973. His torture and war wounds have left him with lifelong physical limitations. In 1993 Senator McCain had a superficial melanoma removed from his face. Then in 2000 the melanoma had returned and had penetrated the skin more deeply. This was removed along with some lymph nodes to diagnose if his melanoma could have spread. According to reports the nodes had come back clean.  He has had two more superficial melanomas removed since his surgery in 2000.

 

Sources:   

https://www.loc.gov/
http://alchetron.com/Maureen-Reagan-796328-W
http://www.pbs.org/newshour/rundown/george-washingtons-medical-chart/
http://fdrsdeadlysecret.blogspot.com/
http://www.doctorzebra.com/prez/z_x34skin_g.htm
http://www.nytimes.com/1987/07/31/us/reagan-to-have-surgery-on-nose-for-skin-cancer.html
http://abcnews.go.com/Politics/story?id=121411&page=1
http://www.medicinenet.com/script/main/art.asp?articlekey=14443

Still having fun in the sun

By Jennifer Millar, SolSurvivors Oregon

A melanoma diagnosis is not a sentence to a life sans sun-filled vacations, but it is different than before. When I was a senior in college, my girlfriends and I had booked a trip to Oahu for a graduation present to ourselves. A few months before we were supposed to go, I had my first melanoma. I wasn’t sure at first if I should still go, but I had been looking forward to it for a year. We went and tried to come up with other non-laying out activities for us to do. Since that time, I have been to Hawaii at least a dozen times and while it’s different, I still find it enjoyable. Here are a few tips on how to have fun in the sun…safely.

  • SPF.  We all know about the importance, but when it’s you versus the strong UV rays, SPF now stands for your Super Pale Friend. Reapply religiously!
  • Find the shade or make your own. If you are with people who want to hang out on the beach all day and if you cannot find some shade, get an umbrella or rent a cabana. You can typically get an inexpensive beach umbrella at any of the touristy shops or rent one for the day. You can also get shade tents which work well anywhere you want to be outside for long periods of time. Grab your book or Kindle and enjoy the scenery without getting burned.
  • Get some UPF clothing. Fortunately these are getting more fashionable all the time. Although I’m not a surfer (I have tried it twice!), I do enjoy the look of the surfer rash guards and have several of those. I also swear that even though you are wearing more clothing; it keeps you cooler as your skin is protected from the rays. It takes a little getting used to but now I love the fact that I don’t have to reapply sunscreen all the time to my back, torso, and arms because they are completely covered up. Any actual UPF clothing will have a UPF rating on it, so look for that.
  • While rocking your SPF/UPF clothing, do something active OTHER than laying around outside. Put on your sunscreen and/or UPF clothing and go for a hike, rent a bike, kayak, stand up paddle board, check out local attractions, get a massage, or go snorkeling. There are plenty of things you can do in a sunny environment that don’t involve laying out in the sun.

It should be noted that none of this requires a “base tan” to avoid getting burned. In all my times going to Hawaii post my initial diagnosis I have never gotten burned and I have never preceded my trip by going tanning. My goal now post-sunny vacation is to come back as pale as a left. I consider it a compliment when someone says “oh I would have never known you were in Hawaii, you’re so pale.” Mission accomplished.

Recap: 2016 War on Skin Cancer Event

By Gale Pudlitzke, SolSurvivors Oregon

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.

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.

Corvallis melanoma walk raises $1,135 for research

By Cathy Law, SolSurvivors Oregon

On May 22, 2016, Cathy Law, a member of the SolSurvivors Community Engagement Committee, hosted the first AIM at Melanoma Walk/Run in Corvallis, Oregon. This was a companion event to the OHSU War on Skin Cancer Event and the AIM at Melanoma Walk in Portland during the same weekend. $1,135 was raised from this event! One hundred percent of net proceeds were given to the melanoma tissue bank at the OHSU Knight Cancer Institute. OHSU Knight Cancer Institute is one of four leading melanoma research centers in the U.S. that have laid the groundwork for a tissue bank consortium, which will provide the most basic of tools – primary tissue to be used in research.

This first annual Corvallis Melanoma Walk/Run offers folks who live in the Corvallis area the opportunity to seek out support and education locally. The organizers hope to grow the event each year, as well as to use it as a template for other smaller communities that also want to develop their own local event. If you are interested in starting a walk/run in your town and would like some support doing so, please contact Cathy Law.

Thank you to everyone who came out to join us at the Corvallis AIM at Melanoma Walk/Run and thank you to those who donated to the cause!