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Past Opportunities to Provide Input
- PCORI's Proposed Research Agenda (2021-2022)
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- 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
WASHINGTON, D.C. (Feb. 25, 2016) — Today at the Precision Medicine Initiative Summit at the White House, Joe Selby, MD, MPH, Executive Director of the Patient-Centered Outcomes Research Institute (PCORI), announced an initiative to enable individuals to access data in their electronic health records (EHRs) and share it for research that could improve care for their conditions.
The initiative involves a pledge by 20 Patient-Powered Research Networks (PPRNs) to help their participating patients more readily obtain information from their EHRs. These PPRNs are part of a research resource called PCORnet, a PCORI-funded initiative to build a national patient-centered clinical research network.
The PPRNs will encourage their participant members to share their health information with researchers to support studies that have been identified as highly relevant and useful by network members. The PPRNs are uniquely positioned to facilitate the flow of health data for research and healthcare improvement because they are built to focus specifically on the needs of their participants.
The PPRNs will help participants to retrieve their own EHR data through existing participant portals and offer them an immediate option to make these data available for research. They are using and evaluating multiple ways to help people acquire their EHR data with guidance and input from patients and other stakeholders. For example, nine PPRNs are gathering data electronically either directly from healthcare providers or through intermediaries, including several PCORnet Clinical Data Research Networks (CDRNs).
Their efforts will build toward a future in which an interface for exchanging EHR data based on Fast Healthcare Interoperability Resources (FHIR) will be widely available.
Information shared by patients is crucial for being able to meet PCORI’s and PCORnet’s goal of enhancing the quality, efficiency, and usefulness of clinical research for patients and other end users of study results, Selby noted.
“Information that reflects the everyday, lived experiences of ordinary patients is vital for health research to ensure that it focuses on the questions that matter most to patients and the results are directly applicable and useful to a wide range of patients,” Selby said.
“The goal of the PCORnet Patient-Powered Research Networks and of PCORI is to ultimately empower people to ask for their health data from healthcare providers and receive it in the easiest and most useful way,” said Sharon Terry, MA, President and CEO of Genetic Alliance, which leads the Community Engaged Network for All (CENA) PPRN and serves in a leadership role in the PCORnet Coordinating Center. Terry also is a member of the Precision Medicine Initiative Cohort Program Advisory Panel.
“This EHR data, combined with information from patient self-reports and other sources, will be critical in understanding patient-outcomes for millions of Americans,” Terry added.
The 20 PPRNs along with 13 Clinical Data Research Networks based in health systems together comprise PCORnet, the National Patient-Centered Clinical Research Network. PCORnet is an innovative PCORI initiative designed to make it faster, easier, and less costly to conduct clinical research than is now possible by harnessing the power of large amounts of health data with direct guidance and input from patients.
PCORnet is building the means to securely access information on the health experiences of tens of millions of patients and hundreds of healthcare organizations for research purposes, tapping resources including EHRs, insurance claims, outcomes reported by patients themselves, and other data. PCORnet is engaging thousands of patients and care providers, and hundreds of health systems in collaborative partnerships to determine how to use the national network’s data resources and access to patient populations. Patients are centrally involved in PCORnet’s governance. In the process, PCORnet is transforming the culture of clinical research from one directed by researchers to one driven by the needs of patients and those who care for them.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, non-profit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work.
PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct comparative clinical effectiveness research efficiently by creating a large, highly representative network for conducting clinical outcomes research that directly involves patients in the development and execution of the research. More information is available at www.pcornet.org.
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