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PCORI Could Look to NIH, FDA, and Industry for Funds for Data Networks

By Rebecca Adams, CQ HealthBeat Associate Editor

January 29, 2014 -- The network of electronic patient records under construction by a research institute launched under the health law looks like it will contain the medical data of a broad swath of the U.S. population—about 28 million in 2015.

The network launched by the nonprofit Patient Centered Outcomes Research Institute (PCORI), created to identify which treatments and methods of health care delivery deliver the best medical outcomes, may include information on that number of people within 18 months, said the group’s executive director Joe Selby on Wednesday.

The organization announced last month that it is awarding $93.5 million to 29 groups and a coordinating center to build electronic networks that can be queried by researchers and others. The goal is to create databases that could be tapped to provide information that could be useful in developing new cures or to see if one treatment works better for a particular population than another one for the same condition.

"The real excitement will come once we see this network in action: helping to speed efforts by clinical researchers to test the treatments and cures that so many people urgently need,” observed National Institutes of Health Director Francis Collins in a recent blog post.

Eventually, Selby said the network and its partners have the potential to expand so that it “captures half of the country at least.” Selby said that during the next 18 months, different groups will test ways to allow researchers from organizations including NIH to tap into the records while protecting patients’ privacy and confidentiality.

Selby said during a webinar that after the 18 months are up, “We certainly anticipate we will have to make an additional infrastructure investment.” But he hopes other partners “will help to sustain the network over time.”

PCORI may look to the NIH, the Food and Drug Administration, or to health industry partners to help support and pay for the network as it continues to grow in the future.

“I sure hope the NIH finds ways to use the network,” said Selby, who also noted that Collins is providing input into the development of the network. Collins is on the board of governors of PCORI.

Selby added that working with “industry would be fantastic. We’d love to partner with them.”

The system—known as PCORnet—will be made up of two types of data networks, Selby said in a 37-page PowerPoint presentation.
One part of PCORnet, called the Clinical Data Research Networks, will include records from academic health centers, hospitals, health insurers, Veterans’ Administration clinics, pediatric hospitals and physicians, private electronic health record companies, the cities of Chicago and New York, and the state of Louisiana. The groups will build a distributed data network that allows the data to be housed in the institution where it was created but permits researchers outside of the institution to use it.

The idea is to enable researchers to pose a research question—maybe something like how many diabetic patients within a certain age range also have another specific diagnosis. The network would allow the researchers to quickly submit that question to each of the 29 PCORnet groups. Each group could run the query against their data and return a response. The networks are to be built with data security protections and are supposed to provide just the amount of information needed to answer the question.

To do that, officials operating the networks will need to overcome technical challenges with the way that different electronic records systems work together and make sure that they do not run afoul of the 1996 Health Insurance Portability and Accountability Act (PL 104-191), which protects patients’ privacy.

Those groups will work with the other part of PCORnet, known as Patient-Powered Research Network partners, which typically represent groups of patients. Those include the American Sleep Apnea Association, the COPD Foundation for Chronic Obstructive Pulmonary Disease patients, the Crohn’s and Colitis Foundation of America, the Global Healthy Living Foundation, Massachusetts General Hospital officials working on mental health issues, and University of California, San Francisco officials working on cardiovascular issues, among many others. Those groups will try to broaden the networks of patients and collect standardized data from patients.

An existing PCORI coordinating center, led by Harvard Pilgrim Health Care Institute and Duke Clinical Research Institute, will provide technical and logistical support and help oversee the program.

Collins has been a cheerleader of the new efforts. “NIH is thrilled that these organizations have come together and agreed to create a single, overarching network that will be seamlessly integrated using electronic databases,” he wrote in a Dec. 17 blog post.

Rebecca Adams can be reached at [email protected].

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