- The PCORI Strategic Plan
- Our Programs
- Our Vision & Mission
- Financial Statements and Reports
- The PCORI Strategic Plan
- Board of Governors
- Methodology Committee
- Authorizing Law
- Evaluating Our Work
- PCORI's Advisory Panels
- Procurement Opportunities
- Proposed New Methodology Standards for Usual Care as a Comparator (2023)
- Draft Key Questions: Systematic Review of Audio Care for the Management of Mental Health and Chronic Conditions (2023)
- Patient-Centered Economic Outcomes Landscape (2023-2024)
Past Opportunities to Provide Input
- Stakeholder Views on Components of 'Patient-Centered Value' in Health and Health Care (2023)
- PCORI's Proposed Research Agenda (2021-2022)
- Proposed National Priorities for Health (2021)
- Proposed Principles for the Consideration of the Full Range of Outcomes Data in PCORI-Funded Research (2020)
- Proposed New PCORI Methodology Standards (2018)
- Data Access and Data Sharing Policy: Public Comment (2017)
- Proposed New PCORI Methodology Standards (2017)
Comment on the Proposed New and Revised PCORI Methodology Standards (2016)
- 1. Standards for Formulating Research Questions
- 10: Standards for Studies of Diagnostic Tests
- 12. Standards on Research Designs Using Clusters
- 13: General Comments on the Proposed Revisions to the PCORI Methodology Standards
- 2: Standards Associated with Patient-Centeredness
- 3: Standards for Data Integrity and Rigorous Analysis
- 4: Standards for Preventing and Handling Missing Data
- 5: Standards for Heterogeneity of Treatment Effects
- 6: Standards for Data Registries
- 7: Standards for Data Networks as Research-Facilitating Structures
- 8. Standards for Causal Inference Methods
- 9. Standards for Adaptive Trial Designs
- Peer-Review Process Comments (2014)
- Draft Methodology Report Public Comment Period (2012)
The eighth PCORI Annual Meeting last month highlighted so much of what makes our community special: a broad, diverse range of engaged stakeholders; inspirational expert speakers; compelling results from patient-centered studies; and rich, informed discussions that help illuminate the most important issues facing our healthcare system and the people who depend on it.
The shifting dynamics around the COVID-19 pandemic meant that we again gathered virtually, but we have learned that virtual meetings can still provide a powerful experience—and they also have the advantage of allowing many more people to attend, creating a more inclusive experience.
More than 2,100 people attended this year’s annual meeting, many more than would have likely been able to attend in person. As discussed in a breakout session on lessons learned about telehealth, virtual visits have the potential to reduce time and expense and increase access to care for many people.
As with telehealth visits, though, virtual convenings cannot always take the place of face-to-face connections, and we certainly hope to include an in-person component in next year’s annual meeting as circumstances allow. There is something about the energy of gathering in a conference room or ballroom, the pleasure of a quick hallway connection, and the buzz of animated discussion that motivates and encourages us all.
Stakeholder Voices Echo Common Themes
It was inspiring to hear so many stakeholder voices coming together, and validation for so much of what we are doing at PCORI.
As I explored many of the more than two dozen sessions and poster presentations, I was struck by the common themes I heard reinforced over and over again by speakers, all relevant to the stakeholder-engaged research PCORI funds: the importance of building trust and growing partnerships, the need to “meet people where they are,” the many subtle ways in which bias and racism manifest in clinical encounters and the larger society, and the imperative of considering the social determinants of health that are present everywhere we "live, learn, work, and play."
These concepts are peppered throughout our recently approved Strategic Plan and are central to much of the research and research-related projects we fund.
The [Annual Meeting] highlighted so much of what makes our community special: a broad, diverse range of engaged stakeholders; inspirational expert speakers; compelling results from patient-centered studies; and rich, informed discussions...
One of our keynote speakers, Ashley Valentine, MRes, Co-Founder and President of the Sick Cells patient education and advocacy group, captured in her moving life story the need for the kind of holistic, patient-centered approach to research that characterizes PCORI’s work. She described the tremendous toll that sickle cell disease took not only on her brother Marqus, who died at age 36, but also on her family. Her estimate of the family’s costs and burdens for the single month of July 2018 was sobering, including more than $1,000 in out-of-pocket costs, nearly 200 hours in time lost from work, 24 doctor’s appointments, and 20 visits to different pharmacies, in addition to the impact on the family’s mental health and home life. This was a compelling reminder of the importance of our expanded Congressional authority to include the “full range of outcomes” where possible in PCORI-funded studies.
Health Equity a Central Theme
The theme of health equity ran through many of the sessions, in keeping with its central place in our Strategic Plan and our equity-minded mission that focuses on listening to and generating evidence to improve the health of all people.
An excellent plenary session on addressing the social determinants of chronic disease underlined the need for the holistic approach to which PCORI is committed.
As moderator Nadine Gracia, MD, MSCE, noted in her introduction, “an individual or a family’s opportunity for health starts long before they need health care at a doctor's office … and yet for far too many communities, they don’t have the opportunity to make choices that allow them to live a long and healthy life, or their neighborhoods … aren’t designed to promote health.” Panelists zeroed in on the need for new kinds of partnerships—around housing, education, and economic development, for example—that are focused on systemic issues and populations, and the need to double down on engagement with communities to fully understand their needs to enhance health. As panelist Jen Brown put it, “the people that are closest to the issues are also the people that are closest to the solution.”
Our other keynote speaker, JAMA Editor in Chief Kirsten Bibbins-Domingo, PhD, MD, MAS, also spoke to the need to bring historically excluded populations into the research enterprise, drawing a clear line between the disproportionate effect of the COVID-19 pandemic on many marginalized groups and the historical exclusion of these groups from health research. Discussing her leadership of a National Academies report on improving representation in clinical trials, she noted many reasons why lack of representation is harmful, including the impact on generalizability of data, lack of trust in findings, and costs of billions of dollars. “How can we make sure the clinical research enterprise is accessible to everyone?” she asked.
Long-Term Implications of COVID-19
Another major meeting topic was the continuing impact of the COVID-19 pandemic.
A panel session covering the health inequities that have been both revealed and exacerbated by the pandemic highlighted many of the threads that run through our engagement activities, such as the importance of working with trusted community partners around relevant health messages for communities; panelists mentioned working with Spanish-speaking physicians, church leaders, and celebrities, for example.
Another thread underscored the value of effectively breaking down data for transparency, such as infection and hospitalization rates by zip code.
Another breakout session covering lessons learned from PCORI’s COVID-19 portfolio reinforced many of these same themes around transparency and trust-building, and also highlighted some promising results that may have implications for care beyond COVID-19.
A study comparing use of the COVID Watch text messaging system to monitor COVID-19 symptoms with usual care found that patients in the COVID Watch arm were much less likely to die or be hospitalized and received critical treatment faster. We also heard about a PCORI Engagement Award–funded program designed to gain insight from members of underserved communities in Boston and Washington, DC, about the challenges created by COVID-19, how to develop meaningful partnerships between researchers and community organizations, and enhancing the capacity of community leaders to partner in future patient-centered research. The resource guides for communities and researchers developed through this initiative may have broader applications beyond the pandemic.
Sessions Available On Demand
Other breakout sessions explored results of PCORI-funded studies and our efforts to make health research more patient-centered and useful, as well as to disseminate study results and see them implemented in practice. Topics included:
- Applying for PCORI funding and the award lifecycle
- Intellectual and developmental disabilities
- Maternal health
- PCORnet®, The National Patient-Centered Clinical Research Network
- Emerging technology research
- Collecting data on the full range of outcomes
This was an inspiring meeting and I extend my heartfelt appreciation to all involved in producing it, and to all of you who attended and contributed to the conversations. If you were not able to attend the meeting, or would like to watch any of the sessions again, recordings of all sessions are available online for free.
Thank you again, and we look forward to you joining us for our next Annual Meeting on October 4-6, 2023.
Published: November 21, 2022
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