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!

Sunscreen Review: Supergoop Setting Mist with Rosemary, SPF 50

If you're like me, you're religious about applying sunscreen in the morning but loath to reapply on top of your makeup. What to do? Finally, the beauty product industry has developed a broad spectrum sunscreen that can be applied on top of your foundation and face powder. Two new SPF-infused setting mists became available this spring from sunscreen brands Supergoop and Coola. Sephora stocks a mini bottle of the Supergoop version, so I decided to give it a try before committing to a full-sized bottle of either. 

The basics: $12 for 1 oz. or $28 for 3.4 oz. at supergoop.com, sephora.com, etc.

Pros: I've taken the purse-sized bottle with me to work every day and given my skin a quick spray before heading outside for lunch or leaving my office for the day. It's lightweight and easy to apply. Smells a bit like sunscreen, but also a bit like rosemary, so the sunscreen scent isn't unbearable. It doesn't make my face shiny or do anything weird to my makeup, so it's perfect for mid-day touchups.

Cons: As with any spray-on sunscreen, it's hard to know if you've applied enough or missed a spot. It can also make the hair around your face sticky if you're not careful, so spray with caution or cover your hairline before spraying.

The verdict: I'm absolutely planning to purchase more of this when I run out. It's the perfect size to keep in my purse, and I've used it almost daily since I bought it. Some reviewers on Sephora.com have complained about stickiness or stinging, but I haven't had any real issues with it. Will keep you posted as I continue using it!

Have you tried any of the new facial sunscreen mists yet?

The wanderlust: Australia

The beach where we went snorkeling on the Great Barrier Reef.

The day before I flew to Australia, I went to happy hour with a couple of friends who spent the entire time trying to convince me I was going to be (a) bitten by a poisonous spider, (b) stung by a box jellyfish, (c) eaten by a shark, or (d) bulldozed by a 6-foot-tall kangaroo. I'm disappointed to report that I didn't see a single dangerous monster my entire two weeks abroad, unless you count Australia's merciless sun.

While Australia is known for some of the highest skin cancer rates in the world, they've also become a leader in melanoma prevention, banning indoor tanning beds and encouraging sun safety in schools. As someone who has been very active in advocating for melanoma prevention here in the states, I've often looked to Australia for inspiration.

The purpose of my trip was pleasure, not business, so I ended up doing more sightseeing than research. But I'm pleased to report that I survived two weeks sans sunburn, thanks to SPF 50 and some of my favorite UV-protective hats and scarves.

I hope you'll enjoy some of the photos from my trip below. I think it's important to acknowledge that, even though I've been impacted by skin cancer, I won't let that scare me from snorkeling on the Great Barrier Reef or taking a walking tour through the rainforest. Nature is gorgeous and I feel blessed to be able to experience as much of it as I possibly can. Here's to checking another box off my bucket list.

My bestie from college and host while I was visiting Australia.

Koala! Hands down, absolute highlight of my trip.

Opera House.

Sydney Harbour Bridge.

The Whitsunday Islands from above.

The Twelve Apostles. Photo doesn't do it justice - it was stunning!

More from the Great Ocean Road.

Practicing safe sun in Australia.

Wallaby!

Street art in Melbourne.

Aussie Rules Footy game.

Getting survivors involved in the design of melanoma research: Our PCORI project advances to Tier 2

Great news to share! The project I've been working on in collaboration with Oregon Health & Science University and SolSurvivors has been selected to advance to Tier 2 of PCORI's Pipeline to Proposals Program. Tier 2 awards provide up to $25,000 to help recipients strengthen community partnerships, develop research capacity, and hone a comparative effectiveness question that could become the basis of a large-scale research project.

Pipeline to Proposal Awards enable individuals and groups that are not typically involved in research (like me!) to develop the means to produce community-led funding proposals focused on patient-centered comparative effectiveness research. In 2014, I was part of the inaugural Tier 1 cohort of this program.

Our project, "Developing Infrastructure for Patient-Centered Melanoma Research," aims to involve patients and other critical stakeholders in the development of strategies for preventing and detecting melanoma at an earlier stage, thereby decreasing death rates. When melanomas are detected early, patients have a 98% five year survival rate, but if the cancer has spead to the lymph nodes and other parts of the body, survival rates drop to a mere 16%*. Because of its origins in the skin—where doctors and patients can see it—melanoma should be one of the most easily recognized and detectable of all cancers. Unfortunately, barriers still exist to early detection of melanoma. During Tier 1, we learned that many patients don’t know what to look for when conducting a skin self-exam. Other barriers to early detection and treatment may include a lack of knowledge that melanoma can be life-threatening, poor/no insurance coverage, lack of transportation/distance to a provider, and treatment by a doctor that lacked expertise in melanoma.

During Tier 1, we began building an “army” of volunteers to attack melanoma prevention from new angles and perspectives. Our greatest accomplishment during the nine-month award period was to support the launch of the Melanoma Community Registry at Oregon Health & Science University. As of January 2015, the Melanoma Community Registry had 2,374 patients, 446 family members of patients, and 146 friends of patients signed up. As director of the project, I contributed by participating in brainstorming meetings, drafting text for recruitment materials, reviewing informed consent language, appearing in TV and newspaper articles promoting the registry, promoting the registry at community events such as the Portland Melanoma Walk, as well as cost-sharing IT development.

In this next phase, we plan to build upon the progress we made in Tier 1, with the ultimate goal of working toward a large-scale research study in collaboration with researchers at OHSU. Specifically, we plan to use surveys and focus groups to identify issues that are the most crucial to melanoma patients and those who care for them. We are also continuing to develop our network and would love to meet others with an interest in contributing to this effort. Want to get involved? Send me a note at info@solsurvivorsusa.org.

View this video to learn more:

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.

*National Cancer Institute SEER

So, I'm in a long-distance relationship

Me and Tim before he moved to SF earlier this year.

Three years ago, when I first started dating Tim, my biggest fear was that I'd fall for him and then he'd leave. Not long before we met, he had moved to Portland to be a supply chain analyst for a large tech company. Much like I was in my early 20s, he was uber-ambitious and willing to relocate just about anywhere if the job was right. Surprisingly, he stuck around for a while--or at least long enough to become an integral part of my day-to-day life. Imagine my chagrin when he came to me last April and told me he'd been offered the opportunity to move to San Francisco ($#&@!^#@#$).

He asked what I thought he should do. Take the job. Duh. It's a fantastic career move, I told him. Plus, he had no reason to stay here except for... er... me. My Portland roots, unlike his, are deep. I knew that pursuing this promotion would make him happy, so I chose to support it 100 percent.

He accepted the job, but then weeks turned into months and the move itself kept getting postponed. While I'm not one to complain, the planner in me kept wondering when he was actually going to leave.

If you're like me, you often take more pleasure or pain in the anticipation of an event than the event or situation itself. Not surisingly, I spent much of those nine months freaking out over a situation I had absolutely no control over, probably to the detriment of that time we did have left together living in the same place.

The two of us at a friend's wedding over the summer.

When he left in late January it was difficult but not unbearable. I spent 12+ hours helping him sort, fold clothes, and pack up his U-Haul. By the end, we were both a bit delusional, but it was nice to spend those last few hours together. It didn't feel like he was saying goodbye permanently because I knew I'd see him again in less than a month.

In all honesty, those first few weeks sucked. I felt discouraged and completely lost. I found myself googling "how to survive a long-distance relationship" the way I google things like "how long should I boil eggs?" and "how do I contour my cheekbones?" He was the one still living out of a suitcase, what right did I have to be worried about the current state of affairs?

Clearly, it's only March, and I'm sure I've only scratched the surface of how to truly survive a long-distance relationship. I've had more emotional ups and downs in the past eight weeks than I did my junior year of high school, but I'm hopeful and open-minded. Tim will be visiting me once a month, and after I get back from Australia, I plan to do the same. I'm learning how to be patient, how to be more forthcoming about my feelings, and to not take everything so darn seriously.

Oh, the places you'll go

Last week, I was sitting in my office, reading through a proposal for a grant, when I looked up at my calendar and realized it's been exactly five years since I was diagnosed with melanoma. How funny it is to think back five years. In some ways, I feel like I'm the same person, but in so many other ways, I feel like I'm not.

I watched a TED Talk over Christmas break called, "The psychology of your future self." The premise of the talk is that--because we can't imagine where we'll be in the future--we underestimate how much we'll change five, ten, or twenty years down the road.



Here's a snippet:

At every age, from 18 to 68... people vastly underestimated how much change they would experience over the next 10 years... Why does this happen? We're not entirely sure, but it probably has to do with the ease of remembering versus the difficulty of imagining. Most of us can remember who we were 10 years ago, but we find it hard to imagine who we're going to be, and then we mistakenly think that because it's hard to imagine, it's not likely to happen. Sorry, when people say "I can't imagine that," they're usually talking about their own lack of imagination, and not about the unlikelihood of the event that they're describing.

The bottom line is, time is a powerful force. It transforms our preferences. It reshapes our values. It alters our personalities. We seem to appreciate this fact, but only in retrospect. Only when we look backwards do we realize how much change happens in a decade. It's as if, for most of us, the present is a magic time. It's a watershed on the timeline. It's the moment at which we finally become ourselves. Human beings are works in progress that mistakenly think they're finished. The person you are right now is as transient, as fleeting and as temporary as all the people you've ever been. The one constant in our life is change.

This year, instead of coming up with a traditional New Years Resolution (or in my case, usually about 15), I decided to set one goal: Travel to Australia to visit my good friend from college.

Sounds simple enough, right? Then why have I been putting it off for the past year and a half? Perhaps the thought of spending a whole paycheck on a flight is scary and it's inconceivable for a work-a-holic like me to take 12 days of PTO in one fell swoop. But I'm doing it! I booked my flight over the weekend, and now I have a little less than three months to plan my trip to the other side of the world. I'm giddy with excitement, and yes, a little scared, but I hope that by continuing to push myself a little outside my comfort zone, I'll become an even better version of myself in 2020, 2025, 2030, and beyond.