Making Sense of the Debate Over Patient Access to Medical Information

“When it comes to health care, information is power.”

This comment from U.S. Department of Health & Human Services Secretary Kathleen Sebelius has sparked a heated debate among doctors and patient advocates about the merits and drawbacks of giving patients easy access to their lab results, doctors’ notes and other personal medical information. A deliberation in this month’s issue of SGIM Forum, the newsletter of the Society of General Internal Medicine (SGIM), is emblematic of how doctors’ and patients’ views on transparency vary.

Internist Douglas P. Olson, MD says it’s too early to offer patients electronic access to their lab results or medical records and that without systemic changes it could actually undermine the patient-doctor relationship lists among his concerns the potential to confuse or worry patients; a lack of evidence showing the positive effect on healthcare safety and quality; and the increased demands on doctors’ time to respond to patient questions.

These concerns are valid and shared by many other doctors. In a recent survey by OpenNotes―a project supported by the Robert Wood Johnson Foundation’s Pioneer Portfolio that enables doctors to share their visit notes with patients online―doctors were asked about their expectations and attitudes toward sharing electronic medical notes. The survey was conducted before doctors engaged with OpenNotes. Responses revealed doctors were worried about the impact on workflow and weren’t convinced that it would make a difference to patients’ health.

In contrast, patients in the OpenNotes survey were almost uniformly enthusiastic about being offered access to their doctor’s notes online. Indeed, Dave deBronkart, aka e-Patient Dave, argues in Forum that it is high time patients had full access to their health information. He believes sharing lab results and other data with patients can help empower them to become true partners in their care. Tom Delbanco, MD and Jan Walker, RN, MBA, of OpenNotes agree. In a third Forumarticle, they outline how the positive consequences of sharing lab results and opening up medical notes to patients could far outweigh the potential risks.

But how useful is it to give patients lines and lines of data from lab results? Can patients really make sense of doctors’ notes when they are littered with medical terms and abbreviations? The OpenNotes survey gives us a clue: while nearly all doctors veyed expected that open visit notes would result in greater worry among patients, fewer than 15 percent of patients concurred. That’s because patients are resourceful: when they don’t understand something they look up what it means or they ask their doctors to explain. And if doctors have to spend more time explaining to patients what lab results mean or what is written in their notes, that’s really not a bad thing. It stands to reason that a patient who is more engaged in discussions and decisions about their health and health care is more likely to take prescribed medicines, follow care plans and better manage their illnesses.

Projects like OpenNotes that are testing the benefits and challenges of giving patients easy access to their health information are critical if we are to truly harness the power of information in health care. Their findings will help us identify if and where we need to make changes to the health care system so that both patients and doctors are using lab results, doctors’ notes and other personal medical information in ways that are helpful to both parties. Addressing Olson’s and other doctors’ concerns,  may mean building in “delaying” techniques so doctors get results first and can reach out to patients with advice, or training doctors and med students on how to write notes that patients can understand. For e-Patient Dave and other patients, it may mean the development of patient-friendly resources that convert data to usable information that patients can understand, such as the data visualization tools common in weather, airlines and finance industries. Final results from the OpenNotes project will be published this year.

Let’s build on what we learn and increase information sharing so we can establish more productive doctor-patient relationships and change the way people engage with their health and health care for the better.

John Lumpkin, MD, MPH, senior vice president and the director of the Health Care Group, Robert Wood Johnson Foundation.

3 replies »

  1. I believe that if physicians, health plans, labs, and pharmacy benefit managers wanted to empower patients, there are simple, low risk disclosures they could make. The arguments against giving patients access that are described in this blog are all about issues arising at the margins, not mainstream issues.

    For example, it is very easy to include a lab report with expert commentary about what the results mean, and with a directive to patients to consult with the physicians who have ordered the lab tests. There is little risk in making this a standard practice.

    Giving patients a comprehensive list of their medications, both prescription and over the counter with easy-to-read commentary that is created by pharmacists and physicians is easy to do.

    Giving patients a plain language medical history with nothing more complicated than a description of the medical diagnosis and treatment is easy to do.

    Whether clinical notes need to be included is a question at the margin of this debate. It should not stand in the way of what is easy to do.

    My company, Dossia, has been providing patient-cotrnolled health records for over six years, despite ferocious opposition and resistance from the medical community. Nothing bad has happened as a result.

    Let’s not overcomplicate this. The fees for processing and providing records to patients are deliberately excessive. It should cost a few pennies per page, not the $.50 to $1 per page fees that many practices charge.

    Medical care would be far better if both patients and physicians had comprehensive records, not records trapped in individual web sites and practices.

  2. Electronic information is better than paper-based information. Not true.

    Information is power. Not true.

    Power results in better health care. Not true.

    Better health care is cheaper health care. Not true.

    I have no problem with patients have access to all their information, but it will just be another cumbersome, expensive mandate with no beneficial results.