Patient Advocates Urge Fast Access To Hospital DataPatient Advocates Urge Fast Access To Hospital Data

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An organization aimed at promoting collaboration among patients, medical professionals, families, and other caregivers is fuming about an American Hospital Association (AHA) recommendation that hospitals be given 30 days to release data in electronic health records (EHRs) after patients request access.

"Perhaps the most important time for patients and their chosen caregivers to have access to their electronic medical record is during a hospitalization and in the week following discharge--particularly access to information involving the medications. The health toll of medication errors during and shortly after hospitalization is considerable," Dr. Alan Greene, past president of the Society for Participatory Medicine (SPM), told information Healthcare via email.

In comments submitted to the U.S. Department of Health and Human Services (HHS) on proposed rules for Stage 2 of the Meaningful Use EHR incentive program, the society asked for immediate patient access to their electronic records. Federal officials have proposed allowing hospitals three days and individual clinicians four days to make data available following discharge or office visit.

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SPM, an organization created by "empowered" patients, patient advocates, and clinicians who support wider patient access to information, called those time periods "arbitrary" and said it would hinder efforts by patients and their advocates to make informed decisions. "Once the records exist and are available to other clinicians via the [EHR], there is no reason why an engaged patient should not have the ability to access them as well," the group said.

"The overarching principle with respect to patient access to electronic health record data running through the entire meaningful use regulation and the health IT standards regulation should be: 'Nothing about me without me,'" SPM comments said, citing the organization's motto.

The AHA last week went in the other direction, calling on HHS to lengthen the compliance period to 30 days. That incensed SPM members, including Regina Holliday, a Washington, D.C., artist who became a vocal patient advocate after her husband died a painful death from cancer, a situation she blamed in part on poor care coordination and the inability for her husband to access his own record in a timely manner. Holliday led a demonstration Sunday at the AHA's annual meeting in Washington, and the SPM announced its support for her protest.

Greene said that mandatory waiting periods like the AHA is calling for are dangerous. "Attempts to allow delayed patient access that extend beyond the post-discharge week are ill-advised and would harm individual patients, our nation's health, and our economy," Greene said.

In a statement from the organization, Society for Participatory Medicine president Dr. Daniel Z. Sands, an internist at Beth Israel Deaconess Medical Center in Boston, called patient engagement the "cornerstone" of efforts to improve healthcare quality and reduce costs. "Those goals cannot be achieved unless we give patients access to their own health information and encourage them to use it," according to Sands.

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