Patients should be partners in EHR systems, HHS panel told

An HHS advisory panel today heard ed recommendations to allow patients input and a central role in their own health data contained in digital record systems.

Patients should be full partners in developing the use of electronic health records (EHRs), speakers said today at a hearing held by a Health and Human Services Department advisory panel.

Under the economic stimulus law, HHS will distribute at least $17 billion to doctors and hospitals that buy and meaningfully use EHRs. Patients need to play a major role in the process, speakers told HHS’ Health Information Technology Policy Committee’s workgroup on meaningful use.

Patients should be in charge of their own data, and patient-generated health information should go directly into physicians' and hospitals' EHR systems, said David deBronkart, a blogger known as “e-patient Dave” who is a leader of the patients’ participatory medicine movement.

Doctors and hospitals should view patients as the platform and the point of integration for their own health data, deBronkart suggested.

“The patient ought to control where his or her data goes. I think the real fix for this is to mandate that the data belongs to the patient, who is thus legally entitled to do anything with it that [the patient] wants,” deBronkart said.

EHRs need to allow for an inflow of patient-generated data into them, he said. Although this may complicate workflows for doctors and hospitals, it should be done because the benefits are great, he added.

“EHRs must have an open application programming interface, both to submit data to the EHR and to export it,” deBronkart said. “This will let innovation take its course, without any need for central orchestration by the government or anyone else.”

Patients also can play a major role in correcting errors in their own medical data, which, in turn, will reduce errors in the systems overall, deBronkart added.

“We must do everything we can to fix this, not fight about it,” he said. “Activated patients are a free, motivated, and readily accessible resource to help with this – and they don’t need a penny of stimulus money.”

Patricia Brennan, director of Project HealthDesign at the University of Wisconsin, told the panel that the stimulus law incentives for EHRs necessitate that patients become more engaged in managing their own health.

“In essence, patients too must become meaningful users of health IT,” Brennan said.

This will involve not only providing the patients with timely access to their own health data, but also incorporating patients’ experiences and self-generated data into treatments, she added.

“Patients are experts at their personal experience; clinicians are experts at clinical care. To achieve better health outcomes, both patients and clinicians will need information from both domains – and technology can play a key role in bridging this information gap,” Brennan said.

Her project, HealthDesign, funded by the Pioneer Portfolio of the Robert Wood Johnson Foundation, is exploring how patients can digitally capture their own recorded observations of daily living into their clinical care. This includes observations of what they eat, where they live, how they feel and with whom they interact.

 

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