A patient’s perspective on a patient-centered conference: Highlights from #PCORI2015 (Part 1)

Elizabeth Stoos and I at the PCORI national meeting. Elizabeth is the coordinator of the Melanoma Community Registry at OHSU and a partner on my PCORI project.

Last week, I was one of about 200 health care consumers (i.e. cancer survivor, caregiver of a person with a chronic condition) to participate in the Patient Centered Outcomes Research Institute’s, or PCORI’s, first national meeting in Washington, D.C. Although some of the work PCORI does is fairly complex, the basic concept is simple:

1. Fund research that will help answer questions that are important to real people
2. Involve real people in the doing research to answer these questions

To do this work, PCORI relies heavily on input from a variety of people: patients and their caregivers, of course, but also physicians, nurses, and health insurers, among others.

As someone who was treated for melanoma more than five years ago, I may not be a “patient” in the most traditional sense of the word, but because of my experience and my relationships with so many others who have been touched by the disease, I can help represent the collective voice of all my “mole mates” to the research world. One way I’ve done this has been by reviewing grant proposals; another way has been by partnering with Dr. Sancy Leachman at Oregon Health & Science University to obtain our own patient-centered research award from PCORI. PCORI invited me to attend this conference to share some of our lessons learned during a panel discussion. Of course, this also gave me access to participate in other sessions and network with other PCORI funding recipients.

In the spirit of helping create a two-way conversation between researchers and the general public, I’ve attempted to summarize some of the highlights from the conference below. PCORI has made some great progess since its inception in 2010, but I think we still have a long way to go to and lots to learn from one another before patients and their families become true partners in the health care decision-making and research process. I’m very thankful that I was given the opportunity to participate in this conference, and look forward to seeing the progress we all make in the coming years.

Day 1: Change is Hard: Challenges and Opportunities in Turning New Evidence into Clinical Practice

“Everything about PCORI is having the right people involved.” –Dr. Eugene Washington 

The first day of the conference was an optional, 5-hour session that was hosted by PCORI in conjunction with AHRQ (another health care research funder) and AcademyHealth. The session included large-group presentations by several of the major players who helped get PCORI off the ground, including AHRQ director Dr. Richard Kronick, PCORI executive director Dr. Joe Selby, and former PCORI board chair Dr. Eugene Washington.

Day 1’s panel discussions were all about dissemination: how do you take a topic that’s already been studied and turn the results of that study into practice? For example, if a team of the nation’s top researchers did a study on skin cancer, and found that eating 10 gummy bears per day prevented skin cancer in adults under 30 years of age, we assume we’d all be stocking up on Haribo. But in the complex world that is our health care system, implementing evidence into practice can take years, sometimes even decades. As the session’s title suggests, implementing research findings into real life practice is hard.

Dr. Mark McClellan, an experienced health care strategist and advisor, spoke about things that might help dissemination of research findings, such as reforming Medicare payment models. He also acknowledged that often times we’re working up against culture change, which inevitably takes time. Bottom line? Although it can be slow-moving, working directly with patients can have a huge impact on effectiveness of dissemination.

Chip Heath, author of Made to Stick, inspires conference attendees to be agents of change.

Panelists during Tuesday’s session agreed that just because something is published in a prestigious medical journal, doesn’t mean it will lead to change in practice. Systematic reviews and clinical practice guidelines can be helpful, particularly for busy clinicians who don’t have time to read 50+ journal articles per day, while others argued that physician assistants and nurses should be able to play a larger role in implementing findings into every day practice. The second panel brought up a few more suggestions: write materials at a reading level that people can actually understand (easier said than done), create materials that are tailored to the population they are targeting (also not as intuitive as you’d expect), encourage clinicians to become more comfortable admitting uncertainty to patients, as well as empowering patients to challenge the system and ask questions (e.g. Do I really need this very expensive MRI?)

One of the panelists, Tara Montgomery from Consumer Reports, challenged us to think about diagnostic tests and medical treatments the way that we buy things like cars and new electronics. She also emphasized that humanizing data and turning it into a story can make it more compelling to the consumer. Some of this responsibility, the panelists said, falls to journalists who can and should be reading the original journal articles.

The afternoon concluded with a totally different type of presentation by bestselling author and Stanford business school professor Chip Heath. After hours of interesting but relatively dry, academic panels, Chip came up on stage and delivered a TED-style talk on how all of us in the room are agents for change. He explained that we all have a “rider” and an “elephant”—one of which is rational and the other more instinctual. Change, he said, happens when we align the elephant and the rider. He explained this using a series of funny anecdotes and examples such as the old vs. new food pyramid and Amazon.com vs. Borders bookstore. His talk, which was viscerally different from any of the preceding talks that day, sent a message that perhaps the medical research community needs to “think outside the box” when it comes to disseminating and implementing evidence-based research.

Overall, it was an intellectually stimulating—albeit long—afternoon, but I left the session feeling a bit powerless and overwhelmed. How can I help bring about change if this group of highly educated, experienced professionals hasn’t quite figured it out yet? Every time I participate in a PCORI review meeting or training, I feel both welcomed by fellow participants, but also a bit intimidated given my lack of post-graduate credentials. Despite being a conference about the importance of consumer engagement, this session still felt very "academic." I hope that in the future, PCORI meetings will become increasing accessible to lay audiences, so that we can more widely start to do the paradigm-shifting work it was created to accomplish.

Change is tough indeed.

Stay tuned for more on Day 2 and Day 3!