Last word: Medical records: Creation vs. control

Melissa Lucarelli, MDThis issue of Medical Economics highlights the ongoing debate about ownership of medical records in the digital age. Medical records used to be actual physical objects such as paper charts and X-ray films, and it made sense to consider these objects the property of their creator.

It might surprise many patients-and even some physicians-to learn that although most states grant patients access to some or all of their medical records, only one state (New Hampshire) has a law declaring that the medical record is the property of the patient. In fact, according to the Robert Wood Johnson Foundation (bit.ly/med-record-ownership), 21 states have passed legislation specifically granting ownership of the medical record to entities other than the patient.

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So why is this suddenly such a hot topic? It’s because the medical record has changed and continues to evolve. An electronic health record (EHR) might include a scanned digital copy of an old paper chart in addition to new templated notes, growth charts, flowsheets, and uploaded data sets from glucometers and ECGs. The EHR even can feature data from wearable devices such as ambulatory blood pressure monitors, sometimes collected directly by the patient and entered via a patient portal. In the very near future, the EHR may also include standard genomic data and interactive tools to assist with integrating and interpreting all of this information.

Next: Shifting focus

Perhaps the focus should shift from talking about ownership of the data to determining access and control. Even in states where it is established that the creator of the record “owns” the data, as physicians we have a legal and ethical obligation to protect our patients from harm. This means that we share the responsibility for maintaining the integrity of the patient information with data backups and protection from malicious hackers, authorizing and restricting access to the record (such as a child who has not yet reached the age of 18), and guaranteeing that error correction is transparent and trackable.

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On the other hand, patients still need the ability to understand where their protected health information is being stored and used, to opt out of data sharing, and ultimately to add their own observations and amendments to the record. This transformation of the EHR is already visible in facilities adopting the OpenNotes concept, where the patient and physician share unrestricted access and secure communication.

The legal responsibility for stewardship of the medical record still lies with the physicians and creators of the reports, but control of the access to this personal data is a patient’s ethical right.

Melissa Lucarelli, MD, is a full-time independent family physician practicing in rural Wisconsin and a member of the Medical Economics editorial advisory board. Do you agree patients have an ethical right to their own health data? Tell us at medec@advanstar.com.