Why Patients Should Have Easy Access to their full Medical Records

Two articles in today's issue of the Annals of Internal Medicine present research on patient attitudes towards access to their doctor's notes: do they want to read the notes? do they think reading notes could be harmful? and, would they share the material with others? The articles and the accompanying editorial put some flesh onto the often vacuous buzzword "patient-centered care."

One article discusses OpenNotes, a year-long test of giving patients ready access to their primary care physicians' notes at sites in Boston, rural Pennsylvania and Seattle. The other describes a VA survey of patients who use My HealtheVet, the VA personal health record system.

Virtually all respondents believe that having access to their doctors' notes would help them. A minority (fewer than 1 in 6) was concerned that the notes would confuse them or cause worry. In the VA survey, 4 of 5 would want to share aspects of their record with family caregivers and other physicians.

The editorial described of how the M.D. Anderson Cancer Center has given patients and their referring physicians access to the Anderson electronic medical record. Since May 2009 more than 40,000 patients have viewed their records over 605,000 times, and 1,300 referring physicians have accessed the records of their patients over 28,000 times. 84% of Anderson's active patients have obtained access to their records. The editorial concludes:

Any health care organization with an electronic medical record and a secure Internet portal can provide patients and referring physicians with real-time access to medical records from anywhere in the world, opening the door to levels of patient engagement and care coordination not previously possible.

I believe that ready access to our own medical records is an important piece of what patient-centered care will mean in the future. The group I practiced with for thirty five years was using an electronic record when I joined. By the good fortune of having been forced to learn touch typing in middle school, I kept the keyboard on my lap and could look at my patient while making notes. I often consulted them about what we should put into the record. In the future I hope that in addition to having real time access to their records there will be ways for patients to make entries of their own. That's collaborative care!

The OpenNotes team compares the innovation they are testing to a new drug. OpenNotes is approaching a potential policy change in an admirably empirical manner. There's lots of reason to be optimistic about the benefits the intervention will offer, but my optimism is a hypothesis, not an established truth.