Monday, November 28, 2016

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

Check out my summary of Day 1 of PCORI's Annual Meeting.

Panelists discuss how to recruit participants for clinical trials at #PCORI2016.
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 also 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 a 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 of 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.

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.

Tuesday, November 22, 2016

A patient’s perspective on a patient-centered conference: Recap of #PCORI2016 (Part 1)

Our view from the PCORI 2016 Annual Meeting Conference.

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 blog posts 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 #PCORI2016.

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's plenary panel.

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.

Read more about days 2 and 3!