Why OpenNotes Will Open Minds

Dec 20, 2011, 10:59 AM

BY THOMAS FEELEY, MD, Vice President of Medical Operations, University of Texas MD Anderson Cancer Center, Houston, Tex.

Patients should know what’s going on with their health and health care. OpenNotes, which enables patients to see their doctors’ notes, is a simple idea that can help improve the patient experience and empower patients to become true partners in their care.

But OpenNotes has found that most doctors are wary of this intervention. Its survey of patients’ and doctors’ attitudes toward sharing electronic medical notes revealed doctors are worried about increased demands on their time and frightening or confusing patients.

These fears are overreactions. At the University of Texas MD Anderson Cancer Center we have been giving patients access to their electronic medical records—including their doctors’ notes—since May 2009. While initially doctors complained that they had to explain more to their patients about what was written in their records, the doctors soon came to realize the benefit of having patients who are more informed about their care plan and lab results.

Today, 84 percent of our patients have obtained access to their electronic medical records, including their doctor visit notes, via a secure Web-portal. Patients have actually become avid readers of their medical notes. 

This has been a particularly important intervention at a cancer center like ours. Our patients are treated on an outpatient basis and in one visit often travel from the lab to the doctor’s office and then to get chemo. Having their medical information as they move from location to location makes a huge difference to our doctors. And it has made a huge difference to our patients and their caregivers. Cancer is a family event. It’s rare that a patient is not accompanied by a family member when they come to our clinic.  We know they are sharing their records and doctors’ notes with their family and we think it helps them and their family members get a better understanding of what’s going on with them.  

Our experience at MD Anderson helps build the case for why this kind of transparency is a good step for patients and doctors. But what we don’t have yet is the scientific evidence and rigorous research to show that opening medical notes does not significantly impact doctors’ time and work flow, or make patients more confused or anxious. 

That’s why the OpenNotes demonstration results will be so important to mapping out the future.  Because it has been tested for 12 months in three very different sites around the country with very different sets of patients, it can provide important answers to questions and help guide future efforts to make sure this model works effectively.

Rather than spending so much time fretting about the implications of sharing information, we should be looking to projects like OpenNotes to show us how we can make it work for both patients and physicians to improve care and improve lives.

This commentary originally appeared on the RWJF Pioneering Ideas blog.