WHEN PATIENTS READ THEIR RECORDS
The benefits of note sharing.
THE WOMAN WAS SITTING on a bed in the emergency room, and I was facing her, typing. I had just written about her abdominal pain when she posed a question I’d never been asked before: “May I look at what you’re writing?”
At the time, I was a fourth- year medical resident. In our emergency department, doctors routinely typed notes, placed orders, and checked records while we were in patients’ rooms. To maintain at least some eye contact, we faced our patients, with the computer between us.
But there was no reason we couldn’t be on the same side of the screen. I sat down next to her and showed her what I was typing. She began pointing out changes. She’d said that her pain had started three weeks prior, not the previous week. Her chart mentioned alcohol abuse in the past; she admitted that she was under a lot of stress and had returned to heavy drinking a couple of months earlier.
As we talked, her diagnosis – inflammation of the pancreas from alcohol use – became clear. I wondered why I’d never shown patients their records before. In medical school, we learn that medical records exist so that doctors can communicate with other doctors. No-one told us about the benefits they could bring when shared with patients.
Access to medical records has changed dramatically over time and can differ widely between countries. Some countries see it as a right, others demand patients jump through legal hoops. In the US, patients generally have a legal right to their medical information. But when the process for obtaining records is cumbersome, few patients try to access them.
In 2010, Tom Delbanco, a Harvard professor and internist, and Jan Walker, a nurse and researcher, started an experiment called OpenNotes that let patients read what their primary-care providers wrote about them. They hypothesised that giving patients
access to notes would allow them to become more engaged in their care.
Many doctors resisted. Wouldn’t open medical records inhibit what they wrote about sensitive issues, such as substance abuse? What if patients misunderstood the notes? Would that lead to lawsuits? What would patients do with all the information anyway?
After the first year, the results were striking: 80% of patients who saw their records reported a better understanding of their medical conditions and said they were more in control of their health. Two-thirds reported that they were better at sticking with their prescriptions. And 99% of the patients wanted the programme to continue.
That day in the emergency room wa s a turning point for me. Since I started sharing notes with my patients, they have made dozens of valuable corrections and changes, such as adding allergies and telling me when a previous medical problem has been resolved. We come up with treatment plans together. And when patients leave, they receive a copy of my detailed instructions.
The record becomes a collaborative tool for patients, not just a record of what we doctors do to patients. When patients see their medical records, there’s more trust and more accuracy.
It’s changed my practice and fundamentally transformed my understanding of whom the medical record ultimately belongs to: the patient.
Should doctors routinely share medical records with their patients? Details on how to share your thoughts are on page 6.