Journal of the American Medical Informatics Association outlines arguments for and against expanding patient access to their health data.

Ken Terry, Contributor

November 29, 2011

4 Min Read

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Should healthcare providers give patients access to their electronic health records and if so, how do they make that happen? A new review in the Journal of the American Medical Informatics Association (JAMIA) examines the complexities of giving patient access to their records online.

Written by researchers at the University of Toronto but focused largely on the U.S. environment, the study notes that while EHR data is not typically being shared with patients, many consumers want access. And research suggests that data sharing with patients, coupled with communication and education, can help improve efficiency, quality of care, and patient satisfaction while also lowering costs.

On the other hand, the researchers point out, there are many barriers to making that goal a reality. Among them are:

-- The cost of integrating patient access features into existing EHRs that were not designed for it.

-- The fragmentation of data into many health information silos maintained by different organizations.

-- Lack of understanding of the privacy implications of online data sharing.

-- Liability concerns that may arise from the sharing of data among patients and multiple providers.

-- Disagreements over whether patients or providers control the data.

-- Disagreements over how timely patient access to data should be.

-- Lack of a consensus regarding which portions of an EHR should be available to patients.

-- Questions about whether physicians should be able to screen certain information, such as lab results, before patients can see it.

-- The inability of patients who lack medical training to understand much of the data in an EHR.

-- The lack of time (and incentives) for physicians to translate their EHR data into laymen-friendly terms.

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Under the federal Health Insurance Portability and Accountability Act (HIPAA), every person "has a right of access to inspect and obtain a copy of protected health information." Although that data is supposed to remain electronic if it originated in an EHR, in practice it is usually printed out for patients when it is provided at all, according to Robert Steinbrook, writing in the New England Journal of Medicine.

The Meaningful Use regulations require that outpatient providers give patients clinical summaries within three business days for at least half of all office visits, if requested. Hospitals have to provide an electronic copy of discharge instructions upon request.

Despite these laws and regulations, the access of patients to their own electronic health records is still highly variable, and the JAMIA article cites compelling arguments both for limiting and for extending EHR access.

The arguments for limiting access revolve around the fact that patients don't know as much as physicians do about healthcare. If patients see things in the EHR that they don't understand, for example, they may become confused, upset, and prone to jump to conclusions, the authors note. One way to deal with that might be for organizations to hire health educators who are available to explain the data to patients. But that doesn't seem to be an option for small practices.

Similarly it may not be a good idea to provide the entire EHR to a patient when physicians make notes concerning matters that patients would be better off not knowing about. For example, if a doctor writes that a patient is a suicide risk, he or she might not want the patient to see that note.

One argument for expanding patients' access to data is that they might not receive it in a timely manner if they have to wait for their physicians to be available. "To avoid this, [a study by] Halamka et al recommends that providers engage in timely review periods to enable verbal, face-to-face discussions about new test results before revealing them to patients through a patient-accessible EHR," according to the JAMIA researchers.

The authors' conclusions are fairly modest: Withholding electronic records from patients isn't a tenable option anymore. And second, IT vendors should work with providers and patients to address the issues involved in data sharing. "The valid concerns that are raised should not block [patient] access but should inform the design and maintenance of new systems to ensure optimal use for both patients and providers," they conclude.

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About the Author(s)

Ken Terry


Ken Terry is a freelance healthcare writer, specializing in health IT. A former technology editor of Medical Economics Magazine, he is also the author of the book Rx For Healthcare Reform.

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