Blog

National Health IT Week: PCORI’s Support for Developing an Ideal Health Data Network

Published: Sept. 12, 2012

We know that gathering, assessing and using electronic health data is critical to improving the delivery of care and patient outcomes. National Health IT Week, which this year is September 10-14, highlights the needs, challenges and concerns we must address as we work toward a more robust national health information technology (HIT) system.

We know these issues well at the Patient-Centered Outcomes Research Institute and have made addressing them one of PCORI’s critical priorities. As part of our research agenda, we’re looking for ways to support novel uses of HIT and help to build a national data infrastructure for conducting and disseminating patient-centered outcomes research (PCOR). From establishing networks to developing research methods to engaging patients and stakeholders, we’re focused on improving the quality of information available for health and health care decision-making.

To mark National Health IT week, I thought I’d highlight four accomplishments through which PCORI is helping to advance the use of HIT through research designed to better address the needs and concerns of patients and those who care for them. They are our:

  • First National Priorities for Research and Research Agenda
  • National Workshop to Advance the Use of Electronic Data in Patient-Centered Outcomes Research
  • Pilot Projects Program
  • Draft Methodology Report

National Priorities for Research and Research Agenda

The fifth of our national priorities for research is “Accelerating Patient-Centered Outcomes Research and Methodological Research.” This area of research focuses on improving the nation’s capacity to conduct PCOR, including building data infrastructure. Our research agenda also notes our interest in the impact electronic health records (EHRs) can have on research, dissemination and outcomes. A PCORI Funding Announcement (PFA) to support studies under this research priority will be released later this year.

National Workshop to Advance the Use of Electronic Data in Patient-Centered Outcomes Research

Building quickly on our first National Priorities and Research Agenda, we and our Methodology Committee hosted a July workshop to discuss the role that electronic data can play in advancing PCOR.  Almost 100 patients, caregivers and other stakeholders attended the event at Stanford University to discuss current limitations, outline an ideal data network, and zero in on the best methods to accomplish our goal. A total of nearly 200 more interested participants attended via webcast.

Toward the end of the meeting, the vision of a “network of networks” emerged, with data contributions not just from health systems and their electronic health records but also from patients joining together through online networks to contribute research information but also to gain the ability to connect and communicate with others.  The workshop heightened appreciation for the critical role of patients, not only as contributors of data and participants in studies, but also in the governance and the use of the data resource.  We continue to explore this vision and we hope all of our stakeholders will continue to contribute in this effort moving forward.

Pilot Projects Program

Our first funding initiative, PCORI’s Pilot Projects Program, is already supporting the collection of preliminary data to advance the field of patient-centered outcomes research. Several HIT-focused projects are among the 50 projects funded earlier this year. These include:

  • A California project to develop an effective and secure digital portal to access and display real-time clinical and biomarker information for use by patients and health providers to help improve patients’ understanding of their disease progression and therapy options.
  • A Colorado project to explore the advancement of mobile technology in health management.
  • A Georgia project to evaluate the relationship between patient-centered care and the implementation of electronic health records.
  • A Maryland project designed to streamline informed consent options for CER studies, including studies that utilize EHRs.

Draft Methodology Report

In its first draft report, our Methodology Committee puts forward 60 standards to guide patient-centered outcomes research. Included in the report is a discussion of how electronic medical records could be tapped to answer significant patient-centered questions. The report recognizes, however, the challenges we face in this area. “While millions of visits to physicians, hospitals, and other providers are now recorded in electronic medical records (EMR) in the U.S., the vast majority of those electronic data cannot be used for research,” it notes. “This enormous potential of EMR to answer significant PCOR questions remains largely untapped.”

We’re just starting to explore how we at PCORI can maximize our investment in HIT-related research with a strongly patient-centered focus. We want to support the development of electronic health data systems and enable their use as a research tool that can answer patients’ persistent questions.