A patient’s perspective on a patient-centered conference: Highlights from #PCORI2015 (Part 2)

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

Patients are changing from research subjects to research partners. -Dr. Harlan Krumholz, PCORI board of governors and faculty member at Yale School of Medicine

Day 2

Dr. Joe Selby, executive director of the Patient-Centered Outcomes Research Institute, opened day 2 the PCORI Annual Meeting by giving an overview of the type of research PCORI funds: patient-centered comparative effectiveness research. CER, he said, compares two or more options about things that matter to patients. According to Dr. Selby, this research should be conducted in "real world" settings and should ideally pay attention to differences in effectiveness for different sub-groups of people (e.g. does a particular treatment work better for women than men).

When PCORI began awarding research contracts just a few years ago, most of the funding they offered fell into four broad categories: (1) assessing prevention, diagnosis, and treatment options; (2) addressing disparities; (3) improving health care systems; and (4) communication and dissemination research. Now, PCORI funding mechanisms are becoming increasingly targeted, addressing specific diseases or other topics that have been identified as high priority. These include programs that focus on asthma, MS, and reducing long-term opioid use, among others. PCORI has also become increasingly interested in funding large studies that better represent the entire population.

The morning's keynote presentation was given by Dr. Victor Montori, an endocrinologist and health services researcher at the Mayo Clinic. Dr. Montori gave a compelling presentation on the importance of involving patients in decision making. What's best for a person, he said, depends on what that person values. Dr. Montori also lamented the curent research funding process, which leaves about 85% of scientific proposals unfunded. To do the type of large studies PCORI aims to fund, he argued, research institutions need to end competition and encourage collaboration instead.

During the following panel, which included a number of stakeholders from various health care organizations, Nancy Brown of the American Heart Association said that if patients really understood how the research process worked, they would be horrified. She also said that people don't want to waste their time thinking about their health--it's only when they become sick that health care becomes the center of everything. In the same panel, former U.S. congressman Tony Coelho spoke about the role patient advocacy organizations play in bringing the patient experience to our legislature. He also noted that we all need to advocate for PCORI so that it doesn't disappear in 2018.

After a series of several plenary presentations, I was eager to break out into smaller group sessions. The two breakout sessions I attended on Day 2 highlighted examples of successful awardees from the Communication and Dissemination Research (CDR) program and the Eugene Washington Engagement Awards. In the CDR panel, shared decision-making tools featured prominently as a means of improving communication between patients and their doctors. Some awardees used focus groups to develop and refine their decision-making tools. Research teams found it was crucial to solicit feedback from providers like doctors and nurses in addition to patients so that these tools could realistically be used in the clinic. In the second breakout session, Engagement Award recipients shared examples of "pre-research" activities they had conducted. Some projects used Engagement funds to conduct a needs assessment in their target population. Other projects used their award to build a curriculum to train people to better understand and conduct patient-centered comparative effectiveness research.

During the final breakout session of day 2, I presented as part of a panel discussion on the Pipeline to Proposals. The Pipeline program provides funding to individuals or groups who would not ordinarily receive research funding from PCORI, and trains us step-by-step, so that--theoretically--in three years we will have built the foundation for a successful, full-scale PCORI award application. (Read more about our project.) I enjoyed participating in this session because it gave me a much-needed opportunity to connect with follow Pipeline awardees, but also because I believe this program is truly emblematic of the type of patient-driven research collaborations PCORI was designed to support.

A recent Time magazine article (that I found in the airport on my way home from the PCORI conference) addresses a patient-centered research question about breast cancer treatment.

Day 3

Day 3 of the meeting featured a keynote presentation by NIH director Dr. Francis Collins. Even though PCORI is technically a nonprofit entity, not a federal agency like the National Institutes of Health, it was impactful to have the head of AHRQ and the head of NIH lend their time to this conference. I think it helps legitimize PCORI as a credible, scientifically rigorous organization, even though the work they fund is quite a bit different.

On day 3, I attended two very different breakout sessions: one on comparative effectiveness research methods and one on how to use your patient story to make a difference in research.

Over the past few years, PCORI has developed comprehensive methodology standards that govern all aspects of the proposal, from how to involve patients in the research process to how to analyze the data collected during a study. The purpose of following these standards is to ensure research findings are valid and can be replicated. Scientific methods are evaluated based on data quality, study design (e.g. randomized controlled trial or observational study), and how the data is interpreted. The PCORI staff member who lead the session emphasized that, while there is no such thing as the perfect study--there will always be trade-offs--it's important to be cognizant of where weaknesses might be so that you can consider how those weaknesses might impact your results.

The last session I participated in was by far the most hands-on. PCORI's engagement staff spoke about storytelling as a "method" of sparking engagement and collaboration. They also shared a tool they created to walk patients through the process of teasing out bits of their patient story that might be relevant to a research question. While the tool was still in draft form, I loved the concept. I also loved to have something tangible I could take home with me after the conference given that so many of the other sessions were very philosophical and not immediately applicable to my daily work.

Finally took the time to do some sightseeing while visiting Washington D.C.

Major themes and takeaways

• Communicating research results back to the community is essential for building and maintaining trust (bonus points for involving patients and other stakeholders in developing a plan for sharing research results).
• PCORI funding announcements are becoming increasingly more targeted and aimed at creating large, pragmatic clinical trials that more broadly reflect the "real world."
• Rigorous research methods and meaningful patient engagement are equally important to PCORI, even though they can sometimes feel at odds with one another. Many applications they reject are dinged, though, because of their lack of the latter.
• There's no one-size-fits-all model for engagement, but here are some activities that have been successfully used by PCORI awardees to create meaningful engagement: 
• (1) Including a patient partner as a co-investigator on the project and compensating them financially as such,
• (2) Include patients, caregivers, and other stakeholders like physicians on project advisory committees, and
• (3) Address research questions of interest to patients as identified by online surveys, focus groups, or other meetings.

As I mentioned in my first recap post, overall it was a great event. I'm glad I was given the opportunity to attend. I also look forward to seeing further progress towards socializing and truly implementing patient-centered principles in research and clinical practice.

To learn more or view archived videos from the 2015 PCORI Annual Meeting, visit www.pcori.org.

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!