Reading your doctors' notes about your conditions and treatments may help you feel more in control of your care. Researchers did a study of 105 doctors and more than 13,000 patients. Patients were given online access to their doctor's notes for one year. About 5,400 patients read at least one set of notes and completed a survey. The surveys showed that reading the notes helped people understand their medical issues. Nearly 80% of patients who read notes were better about taking their medications. Doctors were worried that patients who read their notes would become worried or offended. They also thought the access to notes would add time to office visits. But none of those things happened. Doctors saw their patients become more empowered, and trust them more. Nearly all of the patients 99%said that the open notes program should continue. The study was published October 1 in the Annals of Internal Medicine. Reuters wrote about it.
By Mary E. Pickett, M.D.
Harvard Medical School
What Is the Doctor's Reaction?
I saw a complicated patient this week. Before I went into the room, I re-read the note I had written the last time I met with her. Our visit had been brief. But as I had written that note, I clicked back and forth in her computer chart. I reviewed labs and reports. I updated problems and plans. I left notes to myself, comments about our goals and progress, and questions that were still on my mind. I work hard to put my thoughts together when I write out my notes. I wondered if during her last visit, my patient knew how deeply I thought about her health. Or did she leave feeling as if our short visit didn't make a difference?
So when I saw her this week, I thought I would try something new.
"You know," I said, "I was reading through my last note about you, and I thought you might want to read it. Would you like to take a copy of my last note home?"
By coincidence, that same day, results from an interesting study were released. Three large medical centers made doctor notes available to their patients on a trial basis. More than 13,000 patients were given access to their notes by a computer link. The trial continued for a year. Doctors and patients were then asked to comment about the experience.
More than three out of four patients said that reading their doctors' notes helped them to feel more in control of their care:
- They understood their medical issues better.
- They had a clearer memory about the decisions that were made in office visits.
- They felt better prepared for future visits.
About three out of four patients also said it caused them to take their medicines more reliably. And 99% of patients wanted the open notes program to continue.
Doctors were asked, "What was the best thing about opening your notes to patients online?" They said there was:
- Improved trust
- More transparency
- Clearer communication
- Shared decision making
- More empowerment in their patients
Some doctors worried that patients would feel scared or insulted by what they read. But comments mostly put these fears at ease. For example, one patient commented, "In his notes, the doctor called me 'mildly obese.' This prompted my immediate enrollment in Weight Watchers and daily exercise. I didn't think I had gained that much weight. I'm determined to reverse that comment by my next check-up."
My own patient's reaction after reading her note was not what I had expected. I thought she would pleased, appreciative and better informed. But she was upset, and she phoned me. She said I had misunderstood something that she said. She and I spent time on the phone and we came to an understanding. I suspect it will lead to better care.
What Changes Can I Make Now?
The open notes study shows us that a lot of good information can be lost in translation when a doctor sees a patient in an office visit.
Should you ask your doctor if you can read your chart notes? Most patients don't, but it is not a bad idea.
Most doctors do not expect patients to read their notes, and notes can be hard to decipher if you are not used to medical terms and abbreviations. I am sure many doctors would appreciate knowing ahead of time if you plan to read them. It's likely that they will spell out more words and use plain English!
You do have a legal right to read what is in your chart. The Health Insurance Portability and Accountability Act (HIPAA) requires a medical provider to provide you with a copy of your chart notes if you request it. You can request a copy for as long as your information is kept by the medical office. There are some exceptions, such as psychotherapy notes.
Medical centers will release your chart notes to you if you sign a written request.
At a minimum, ask your doctor to provide you with a printed list of your health problems and your medications. If you need to, ask your doctor to why you are taking each of your medications. If you are ever hospitalized, it is helpful to request a "discharge summary" from the hospital's medical records office. Make the request a week or so after you go home from the hospital. That way, your doctors have enough time to write up a summary of your stay.
What Can I Expect Looking to the Future?
Electronic (computerized) medical records are becoming more common. That makes it easier for doctors to share charted information with patients. Many doctors now send lab results and letters to patients electronically. Some centers give patients password-protected "views" of their charts. This lets people review medications, allergies and other selected information.
Chart notes are not open to patients in most medical centers. But this study will cause some clinics to consider a change. I hope we see more "open notes" in the future. Three out of five patients in this study also felt that they should be able to add comments to their doctors' notes. That may also be a development in the future.