Patient access to their own EMR data

Involving patients as active participants in their own care is an important goal of improving American healthcare. The national priorities called out by the Office of the National Coordinator for Health IT (ONC), as it has elaborated rules for the Meaningful Use of Electronic Health Records (EMRs), cover 5 areas.

The Health Outcomes Policy Priorities, which resulted from a National Healthcare Quality Report by the AHRQ in 2008, are (1) improve quality, safety, efficiency, and reduce health disparities; (2) engage patients and families in their healthcare; (3) improve care coordination; (4) improve population and public health; and (5) ensure adequate privacy and security protections for personal health information.

Clearly, involving the participation of patients in their healthcare is a central theme for Meaningful Use. At a minimum, patients need (1) timely access to their health information (within 4 business days), (2) an electronic copy of their health information upon request, and (3) a clinical summary for each office visit – these are some of the specific Meaningful Use Stage 1 objectives and measures.

Sharing chart information with patients represents a change in the tradition of American healthcare. Chart information, from a legal standpoint, is the property of the person who created it, not the person whom it is about – even though a patient has the right to request a copy of that information. Anecdotal horror stories exist resulting from delayed or problematic access to copies of one’s own healthcare records. These new rules around Meaningful Use add pressure to change that tradition.

But how much is too much? Clinicians keep their records to serve as (1) reminders-to-self for reference during future encounters, (2) information to other clinicians for continuity of care during referrals or transfer of care, and (3) medico-legal documentation used in litigation (either against the clinician, or against other third parties where health records are a part of the argument, e.g. personal injury cases). The audience is therefore technical, clinical and dispassionate, and jargon, technical shorthand, and blunt talk is the norm.

A common concern about disclosing the full content of chart notes to patients (who were not the intended audience when the notes were written) is that unnecessary (and uncompensated) additional time will be required to interpret and explain what is in the note. An additional fear sometimes voiced by clinicians is that routine access to their full chart notes opens the clinician up to potential increased liability exposure from litigious patients “fishing for mistakes.”

To date, this is new territory for American medicine, and fear can fill in the gaps where there is little experience or data. An interesting current research project called Open Notes has enrolled 115 doctors and 25,000 patients at Beth Israel Deaconess Medical Center in Boston, Geisinger Health System in Pennsylvania, and Harborview Medical Center in Seattle.

For a year, participants will get an e-mail after each office visit saying their doctor’s note is available through a secure online portal. Researchers will track if patients read it and find errors, and how they use it. Doctors’ habits are being tracked, too — if they censor themselves or write more patient-friendly notes.

It’s not just for the Web-savvy and well-off. Among the Seattle participants are homeless patients who can log in at such places as the public library. The authors described the project, and also include a web survey for physicians not enrolled in the Open Notes study specifically, in the July 22 edition of the Annals of Internal Medicine.

Clearly, the direction toward a fully participatory tradition of medical record-keeping – involving clinicians as well as patients – is evolving. Meaningful Use requirements take a step in this direction. More complete projects, such as the Open Notes experiment, are also able to gather much-needed experience in order to quell fears and identify the real issues (both positive and negative).

As technologies emerge that can overcome the technical hurdles of sharing information (such as linked EHR-PHR systems), the evolving experience around truly participatory healthcare will move forward. This experience will also shape the kinds of tools that EHR developers create. We live in some very interesting times.

Robert Rowley, MD
Chief Medical Officer
Practice Fusion EMR