As we wrap up 2018 and look to the new year, we wanted to share a number of the milestones and news you might have missed this past year. We’ve gathered a collection highlighting our research and engagement projects, and patient and other stakeholder perspectives on our work, as told through blogs, videos, events, and more. We think this look back will give you a sense of why we’re so proud of the work we and our awardees have done this past year and why we’re so energized about an even more productive year ahead. We hope you will be, too.
It would be impossible to capture all the high-impact results from our funded studies that were reported on our website and in major medical journals in 2018, so we’re highlighting a few major themes.
People with serious mental illnesses are more at risk than the general population for preventable medical conditions, and often don’t get the basic care they need to address them. As a result, they have more health problems and die 10 to 20 years earlier. This feature story on four PCORI-funded projects shows how they are using stakeholder input to test ways to help people with serious mental illness get the physical health care they need.
One project, led by James Schuster, MD, MBA, at the University of Pittsburgh, compared two ways to help those with serious mental illness who receive mental health care at behavioral health homes—not a residence, but a team-based, patient-centered form of care that integrates primary and behavioral care—stay on top of their care. For more on his team’s promising results, and how they hope to disseminate them, see our Periscope from February below.
Telehealth was another area of great interest in 2018 and will continue to be. As the use of digital communication tools expands sharply, there is a growing sense that telehealth can help people better manage their health and improve access to care. But a number of questions remain, including how to reach populations with limited access to technology or who need culturally tailored interventions. PCORI has funded numerous studies—including on hepatitis B infection, childhood hearing loss, and severe mental illness—that look to address those issues, and others.
We highlighted two different stakeholder perspectives from our funded telehealth projects in a breakout session at our 2018 Annual Meeting. This session examined the potential of each study to change practice and what needs to be done to speed telehealth’s adoption.
We also hosted a Facebook Live conversation with PCORI-funded researcher Dror Ben-Zeev, PhD, and a stakeholder partner on that project, Mark Ishaug, MA, about how telehealth can help improve outcomes for people living with serious mental illness.
And we continued our work to address the nationwide opioid crisis. In October, we cohosted a briefing—featuring two awardees and Sen. Bill Cassidy, MD (R-LA)—on how to address the epidemic of inappropriate opioid use in the United States. One of the awardees, Beth Darnall, PhD, who is studying how well alternatives to opioids might work in managing pain, also authored an op-ed in The Hill on this topic.
Stakeholders’ Perspectives in Their Own Words
As you know, PCORI is unique in requiring our awardees to include patients and other healthcare stakeholders in their research, from study design through dissemination of results. We were pleased to highlight their perspectives many times in 2018 on how that work has changed their lives.
In one case, we highlighted a study involving the largest cohort of transgender people in research to date. The research team reported in Annals of Internal Medicine that transgender women who receive estrogen treatment may face a higher risk for stroke and dangerous blood clots than previously thought. In a guest blog post, the project lead and a patient partner in the study framed the context and importance of the findings.
If you attended our Annual Meeting, we hope you got to hear from our opening keynote speaker (and if you didn’t, you can now), Amy Berman, about how she lives a full life with stage IV cancer, prioritizing treatments that align with outcomes that matter most to her, while working full-time at the John A. Hartford Foundation. She shared more of her story in a guest blog.
Finally, in another guest blog, the National Organization of Rare Disorders’ Vanessa Boulanger, MSc, explained the importance of patient-centered research for people with rare diseases. We continued our focus on research to improve care for those with rare diseases—conditions that affect fewer than 200,000 people nationally. Up to 30 million Americans have a rare disease and most conditions are poorly understood.
The Power of Engagement in Research
Given our commitment to engaging patients and other stakeholders in everything we do, we were thrilled to be included just weeks ago in an international set of authors of an editorial in The BMJ about the importance of evaluating engagement—both to show best practices for conducting engagement and also to show skeptics why engagement is worthwhile.
We also are proud to have launched our Engagement in Health Literature Explorer, a searchable list of articles related to engagement in health research. Without a standard language for describing engagement and what it involves, articles like these previously had been hard to find.
We posted many other pieces about engagement throughout the year, including a blog with tips for recruiting and engaging patients from traditionally hard-to-reach populations.
PCORI’s Impact Reflected in Media
Our stakeholder communities and major scientific journals weren’t the only ones paying attention this past year to our work and our funded projects. The media did, too.
We counted more than 800 mentions of PCORI-funded studies and other initiatives in a range of media outlets in 2018, including major national news media like the The New York Times, The Washington Post and The Wall Street Journal; broadcast outlets like NBC and NPR; major digital services like Vox, Morning Consult and STAT; news services like Reuters, The Associated Press and Kaiser Health News; specialty, trade and professional outlets like Medscape, MedPage Today, Modern Healthcare, Scientific American; and Washington-focused policy outlets like POLITICO and The Hill.
We Have Much More to Do
By year’s end, we had awarded more than $2.3 billion in comparative clinical effectiveness research and related projects. We continued to focus on stakeholder-guided efforts to disseminate and promote the uptake of the results of our funded studies. We were pleased to see so many of those studies produce results summarized for professional and consumer audiences on our website and reported in leading medical journals. And we look forward to more such milestones—and others—in 2019.
But none of these achievements, and others we've reported to you over time, would be possible without the involvement and guidance the stakeholder communities we serve. So, thanks for your help. We look forward to continuing to work with you in the year ahead.