All patients have a right to a copy of their medical record. In practice that right is rarely exercised. It usually means submitting a request in writing, paying a fee for photocopying, and waiting weeks for someone to copy and mail the records. The development of electronic medical records has the potential to revolutionize patients’ access to their records, making it possible for patients to review their records securely whenever they want from any internet-connected computer.

But would patients want that? Would it improve their care? Would it help or hinder their doctors’ work?

An interesting study aims to answer these questions. The pilot program, called OpenNotes, approached primary care physicians working for three health care systems in Boston, Seattle, and rural Pennsylvania. These physicians were already working in organizations that used electronic health records. Some of these records already had features that allowed patients access over the internet to their medication list or to their laboratory test results, but none offered patients a chance to review doctor notes. The study proposed to give patients access over the internet to their physician notes for one year. All the physicians in the three locations were invited to participate but had the option of declining. Only the patients of participating physicians were given access to their notes.

We won’t have the actual results from the OpenNotes project for another year. This issue of Annals of Internal Medicine published the results of questionnaires completed by the physicians and the patients prior to the study. The questionnaires asked the physicians and patients about their expectations of how patient access to notes will impact care, and about the potential benefits and harms of this access.

The difference in the answers between physicians and patients was surprising. The authors of the study expected younger and more educated patients to be more optimistic about the project, since these patients would be more technologically savvy and feel they deserve greater control over their care. Actually most patients, regardless of age or education, were very optimistic that the project would be helpful to their medical care, would help them understand their care better, and would give them more control over their care.

Physicians were much more restrained in their optimism. Doctors who opted into the program were obviously more optimistic than doctors who declined to participate, but many doctors in both groups expressed concerns that access to progress notes may increase anxiety and confusion among patients. It’s easy to imagine a patient presenting with symptoms which could be due to many different diseases. Doctors routinely document the many possibilities that will be tested and excluded or confirmed. Many of those possibilities are terrible diseases that will turn out not to be present. Will patients want to know before the test results are available all the scary possibilities? Patients expressed very little concern that reviewing progress notes will make them more anxious or confused. Is that because they are psychologically sturdier than doctors fear, or because patients are naïve about what they’ll be reading?

An accompanying editorial in the same issue describes the experience at M.D. Anderson which has already been offering all its patients online access to their entire medical record, including doctors notes. The editorial states that the M.D. Anderson experience has been largely positive. Patients appreciate having access to their notes, and feel better educated about their disease and treatment. They claim that impact on physician workflow has been minimal.

We’ll find out the results of the OpenNotes project in a year. As healthcare in general moves away from paper records, patients and physicians will have to struggle with balancing transparency with discretion, openness with privacy, and empowerment with guidance.

Learn more:

Patients Want To Read Doctors’ Notes, But Many Doctors Balk (Shots, NPR’s health blog)
Do you want to see what doctors write about you? Apparently, you do (Booster Shots, LA Times health blog)
Inviting Patients to Read Their Doctors’ Notes: Patients and Doctors Look Ahead (Annals of Internal Medicine article)
Access to the Medical Record for Patients and Involved Providers: Transparency Through Electronic Tools (Annals of Internal Medicine editorial)

Tangential Miscellany

The nice folks at the American College of Physicians Internist blog are republishing some of my posts. You’ll be happy to know that the fame hasn’t affected me yet.

I wish you a prosperous, healthy, and happy 2012!