Patients Want Access to Their Clinical Records. Do Physicians Want to Share?

The Annals of Internal Medicine published two articles and an editorial this week about the desire of patients to have access to (and share access to) a personal health record (PHR) — and have access to and share notes from the clinical record. The first article, entitled, “Patient Interest in Sharing Personal Health Record Information: A Web-Based Survey” (lead author Donna M. Zulman) provides the results of a survey among Veterans Health Administration patients who already use the VA’s My HealtheVet Personal Health Record (PHR). The authors report as follows:

In this survey of My HealtheVet users, a striking majority (79%) of respondents were interested in sharing their electronic health information with family members, caregivers, and non-VA health care providers. Sharing PHR information is currently not easy. Many patients have to print the information that they wish to share and hand it to the person with whom they want to share it.

In a separate study entitled, “Inviting Patients to Read Their Doctors’ Notes: Patients and Doctors Look Ahead” (lead author Jan Walker), the authors report on surveys of patients and primary care physicians, some of whom voluntarily participated in OpenNotes — a three-state pilot (Boston, rural Pennsylvania, inner-city Seattle). The conclusions of this study are striking.

About the physicians who used participated in OpenNotes:

Although we observed striking differences between doctor and patient attitudes toward sharing visit notes, the doctors who participated in our project were more optimistic about the tangible benefits for patients than we postulated. They predicted improvements in both patient safety and satisfaction and believed that patients would be better prepared for visits, would feel more in control of their health care, and would take better care of themselves.

What about the non-participating physicians?

Here are just some of the data reported in the study:

Across the study sites, 71% to 77% of participating PCPs thought that patient satisfaction would improve, compared with 29% to 58% of nonparticipating PCPs. In addition, 36% to 62% of participating PCPs and 18% to 33% of nonparticipating PCPs thought that patient care would be safer.

And the patients?

The enthusiasm of patients exceeded our expectations; most of them were overwhelmingly positive about the prospect of reading visit notes, regardless of demographic or health characteristics. In sharp contrast to the expectations of their PCPs, fewer than 1 in 6 patients was concerned about being worried or confused by reading their notes. Moreover, contrary to our hypotheses, we did not find that younger or more highly educated patients who responded to our survey were more likely to agree with the benefits than those who were older or had less education. It was also striking that many patients would consider sharing their notes with other people, including other doctors.

There is also an excellent editorial by Thomas Feely & Kenneth Shine from the University of Texas in which they write:

Informed by the results of these 2 studies and our experience at M.D. Anderson, where should we be going? We believe that the direction is clear: Technology is a powerful tool that can improve transparency in health care. Electronic health records should be used to engage patients, their caregivers, and others in the health care delivery system. Expanding who uses the records and how they use them promises to facilitate communication, decrease redundant testing, and enhance our care delivery in ways we have yet to imagine. However, health care providers must ask and seek answers to critical questions as we move ahead.

These are very interesting reports and the conclusions should help inform discussions about the risks/benefits of PHRs, sharing of the clinical record, and the implications of these new modalities of patient-physician interaction on the relationship all want to enhance and preserve.

I encourage all AmericanEHR readers to review the articles in the Annals of Internal Medicine. Access to these three PDFs is free. Share you thoughts and experiences here so others can benefit.

This post is the personal opinion of the author and does not necessarily reflect the official policy or position of the American College of Physicians (ACP). ACP does not endorse a specific EHR brand or product and ACP makes no representations, warranties, or assurances as to the accuracy or completeness of the information provided herein.


One response to "Patients Want Access to Their Clinical Records. Do Physicians Want to Share?"
  • December 26, 2011
    Alan Brookstone

    Michael, very interesting articles. I believe that there are two major concerns for primary care providers:

    1. They do not want to incur additional workload personally or for their staff by adding an additional mechanism to communicate without capacity to respond.

    2. They fear a loss of control if clinical data is made available to patients without the information being evaluated by clinicians prior to being shared.

    However, the experience is the opposite and once the channels of communication open, the evidence points towards more effective self management by patients and a reduction in workload for practices if the PHR data is shared with sufficient explanation and for specific populations of patients who are motivated to take responsibility for their care.

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