- 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)
February is African-American History Month. The richness and importance of this observance have been brought home to all of us in a most beautiful way in the past six months with the opening of the remarkable National Museum of African-American History and Culture in Washington, DC.
The museum reminds us that America’s rich history encompasses remarkable contributions of African Americans, as well as explores the social and economic inequities that have been part and parcel of the American experience since the days of our founders. These contribute, not surprisingly, to enduring disparities in health status and healthcare quality seen today in diverse African-American communities. So I’m pleased to share a few thoughts about how PCORI engages with African-American communities in conceiving and funding research that aims to reduce these disparities in health outcomes.
From its earliest days, PCORI has been convinced that solving the problem of health and healthcare disparities is a critical need for the medical profession and healthcare system. In fact, addressing disparities is one of our five National Priorities for Research.
Disparities research, PCORI style, focuses on using comparative effectiveness studies to identify treatments and systems-level approaches that can reduce and eliminate this problem. Sometimes, these methods are tailored versions of existing care options redesigned to be more effective for a specific underserved population. In other cases, they are entirely novel approaches designed with and by the population itself in collaboration with researchers and delivery systems.
A Broad Portfolio of Disparities Research
Our disparities work includes a range of patient characteristics and populations, including race and ethnicity, but also addressing disparities linked to geographic location (e.g., rural populations), socioeconomic status, sexual orientation, and other factors. However, a substantial proportion of the studies we’ve funded across our research portfolio—167—specify African Americans as a study population.
These projects involve a variety of interventions and conditions that disproportionately affect African Americans. For instance, PCORI has made major research investments in the areas of sickle cell disease, asthma, and high blood pressure—all focused on African-American populations. The interventions being studied include health education tools tailored to specific audiences. Other projects compare self-management techniques that empower patients to participate in their own care. In one study based in Alabama, patients and researchers are assessing strategies for improving understanding of treatment options for African Americans diagnosed with chronic pain and depression.
The patient voice is integral to all of the work PCORI does, and we try to incorporate as many voices as we can from different racial, geographic, and socioeconomic groups. This is particularly important for African Americans, who have been underrepresented in medical research. With our disparities work, we hope to produce evidence-based results that allow African Americans, as providers and patients, to make informed decisions that lead to better outcomes and ultimately, help reduce disparities.
The Patient Voice
One of our patient partners working toward that change is Neely Williams, MDiv. She’s an African American from the Nashville area who works as patient co-investigator on a project that compares the benefits and risks of several types of bariatric surgery. She has seen the impact of engagement firsthand. She says, “PCORI engages patients in meaningful, respectful ways that allow them to feel like not a subject, but a part of the solution to the problem they’re facing.” That’s the essence of our approach—we recognize that health research works best when patients, as well as other stakeholders such as physicians and nurses, help plan and conduct the study.
We believe that health care and health itself can improve for all patients and communities if they become involved in planning and conducting the research. We have been gratified to experience the high level of readiness, interest, and creative ideas springing from members of the African-American community across the country who’ve joined us in our work.
February 17, 2017, 7:01 PM
Comment by PCORI,
Hi Dr. Nemuseso, thank you for your comment. We have shared your query with our program colleagues, and you may also follow up with them at [email protected] with a link back to this blog post.
February 16, 2017, 9:51 PM
Comment by Dr. Stella H N…,
I am currently running a program on diabetes self-management and Diabetes prevention through the CDC prevent T2 curriculum. I would like to know if my program can be grandfathered into your project on obesity.
What's Happening at PCORI?
The Patient-Centered Outcomes Research Institute sends weekly emails about opportunities to apply for funding, newly funded research studies and engagement projects, results of our funded research, webinars, and other new information posted on our site.