How PCORI Is Marking National Health IT Week

This is National Health IT Week, held annually to raise awareness of how technology can transform research and patient care. It’s a concept that we at PCORI know well.

With many key clinical questions yet to be answered and available medical research resources under strain, health information technology is a promising tool to dramatically accelerate our ability to seek more and better evidence to help patients and those who care for them make informed health and healthcare decisions.

We support National Health IT Week, and everything it represents, in both principle and practice. Among our most important initiatives is our $68 million commitment to build a National Patient-Centered Clinical Research Network designed to improve the nation’s capacity to conduct comparative effectiveness research (CER) studies. This initiative, which we announced earlier this year, falls under the fifth of our National Priorities for Research, Accelerating Patient-Centered Outcomes Research and Methodological Research.

Harnessing Data to Advance Patient-Centered CER

Our vision is to create a large, highly representative electronic data infrastructure that will facilitate efficient, large-scale observational research studies and pragmatic comparative clinical trials within delivery systems. The network will foster research by establishing a library of clinical data, drawn from electronic health records and other data sources, which is captured and stored in standardized, interoperable formats.

It’s a complex vision. Our blueprint for a National Patient-Centered Clinical Research Network includes three primary components:

• Clinical Data Research Networks (CDRNs), system-based networks that originate in healthcare systems such as hospitals, health plans, or practice-based networks and have the potential to become components of a national electronic network. We’ll fund up to eight of these.
• Patient-Powered Research Networks (PPRNs), groups of patients interested in forming a research network and participating in research. We’ll fund up to 18 of these.
• A Coordinating Center, which will connect these research networks, provide technical and logistical support, and assist in program evaluation.

Following a competitive application process, we announced on September 10 that a consortium led by the Harvard Pilgrim Health Care Institute will serve as the Coordinating Center. Meanwhile, we’re looking forward to receiving proposals from those interested in using our funding to develop a PPRN or CDRN. Groups invited through our competitive application process to submit those proposals have until Friday, Sept. 27, to do so. We’ll share more details about the program after that, but we’re pleased that the applicants represent the diverse array of stakeholders, geographies, and populations we hope to see participate in our national network. Awardees will be announced in December.

Advancing HIT Through Already Approved Research Awards

We’re also supporting the advancement of health IT through our broad funding awards, which we issue three times a year.

One study recently approved for funding, will be conducted by researchers based at The Johns Hopkins University and will test the effectiveness of electronic alerts in helping health professionals promote adherence to medications that prevent potentially deadly blood clots.

Another PCORI-funded project, also at Hopkins, seeks to demonstrate the feasibility of using telemedicine to deliver care into the homes of individuals with Parkinson’s disease who have limited access to care. Yet another study, at the University of California, San Francisco (UCSF), is using a tablet-based application to help patients with multiple sclerosis manage their disease and see how they might respond to new medications compared with other patients with similar symptoms. These are the types of research studies that may prove the effectiveness of digital interventions and pave the way for health IT to have a greater role in patient care.

We are also funding methodological research in this area. A study out of the University of Colorado will help explore how to improve the quality of data generated for research from new data sources such as electronic health records, personal health records, Internet blog postings, social media sites, and wearable electronic sensors for example.

Committed to Innovation

Across our initiatives, PCORI has encouraged the use of innovative approaches and collaboration between scientists, patients, and a broad range of other healthcare professionals and stakeholders. Technology broadens opportunities to engage patients in new and meaningful ways that will improve the relevance and usability of research.

We’re committed to improving the country’s capacity to conduct health research, to examining which digital interventions can help to improve clinical outcomes, and to incorporating the perspectives of the entire healthcare community in our work. Harnessing HIT can help to advance each of these goals.

We’re pleased to celebrate National Health IT week and the promise it brings for improving research that will answer questions of most importance to patients, their caregivers, and clinicians.