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Past Opportunities to Provide Input
- 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)
- Past Opportunities to Provide Input
Our mission at PCORI is to help answer questions that matter to patients and those who care for them. Taking this unique patient-centered perspective means we’ll generate a different type of research. Although PCORI will fund a range of patient-centered research studies, we’ve started out by funding specific studies focused on the methods and strategies involved in effective engagement of patients and other stakeholders in research.
The PCORI Pilot Projects program was designed to explore methods and best practices for engaging patients in the health and healthcare research and dissemination process. The PCORI Board of Governors approved funding 50 projects, totaling $31 million, to advance our understanding of how we can support studies that are uniquely responsive to patient needs.
PCORI has as a guiding principle to fund research relevant to a wide range of patient backgrounds, characteristics and conditions. The pilot project proposals provide a window into how effective we are being at living up to this principle.
So what do we know so far? First, we learned that there is a great interest in patient-centered methods research. We received 856 pilot project applications – an amazing and enthusiastic response – and we were able to fund 50 of those projects. The applications covered a wide range of patient populations and research topic areas. More than half of the applications (453) focused on underserved populations, and more than a quarter (243) on a specific ethnic or cultural group. Another 160 proposals addressed the needs of people with disabilities.
We have reviewed the types of applicants to learn how best to attract applications from diverse stakeholders. For this first funding announcement, two-thirds (561) of the applications were from researchers at academic institutions; 38 of those were chosen for funding. We received applications from hospital-based researchers as well (80) and from other research organizations (55), non-profit health systems (28) and community-based health centers (20).
The Pilot Projects program also achieved an impressive level of geographic diversity with projects funded across 24 states and the District of Columbia. Just as we are interested in reaching a range of stakeholders with our application process, we also want to ensure appropriate geographic representation.
We’re eager to learn from these pilot projects, and we’re eager to have each of the research teams learn from one another, which is why we have started our “active portfolio management” process. Although project reports will be available next year, we have planned other ways to get the findings from this work shared as quickly as possible. With help from AcademyHealth, we are in touch with the awardees and will be establishing links between related project groupings. This is a unique way to recognize synergy between projects and enhance the value of the findings for everyone.
We know that the proposals are just the first step and we are looking forward to ensuring that what is learned through this work translates into changes in practice. Nearly half of all of the funded projects (19) focus on strategies for accelerating the adoption of patient-centered research findings. Eleven of the projects have the objective of making it easier to produce, track or measure patient-centered outcomes.
The pilot projects are critical to developing our understanding of how to conduct and disseminate patient-centered research in ways that are responsive to and that benefit patients, other stakeholders, and the entire healthcare community. We are very excited about the ways in which this work will contribute to improved health decision.
We are grateful for the enthusiasm that the pilot projects have generated. It’s gratifying to see connections being made between those who share the passion for PCORI’s work. Please watch for frequent updates from the pilot projects over the next 24 months, including information on new methods that look promising, and the ways in which the patient-centered emphasis is making a critical and much-needed difference in research.
Frank, PhD, is PCORI’s Director of Engagement Research
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