Patients to get a look at physicians' notes

Amid the national push to computerize medical records and make them more open to patients, one of the most intense areas of debate is whether patients should be allowed to see their doctors’ notes online.

Doctors write these one- to two-page comments after every visit, and other physicians who treat the patient read them, too. But the notes usually aren’t readily available to patients because hospitals and doctors’ groups fear that they will misunderstand medical jargon, take offense at a blunt observation, or worry unnecessarily about a precautionary test.

Beth Israel Deaconess Medical Center, however, is about to begin a project called “open notes’’ in which about 100 doc tors at the hospital and two other sites will allow 25,000 to 35,000 patients to read their physicians’ notes for a year as part of their online medical record.

Researchers hope to learn whether the notes prove more useful than objectionable. They hypothesize that access to doctors’ notes will improve care partly because patients will become more knowledgeable about their treatment and about their doctors’ instructions.

Studies show that “patients remember precious little about what happens in the doctor’s office,’’ said Dr. Tom Delbanco, a Beth Israel Deaconess internist and a co-investigator.

The Robert Wood Johnson Foundation gave Delbanco and his colleagues $1.5 million for the project because doctors have “strong differences of opinion about this. But there is almost a religious character to the debate. It’s uninformed by evidence,’’ said Stephen Downs, an assistant vice president at the foundation. It will be the largest study yet on the issue, he said.

Patients will start getting online access to doctors’ notes by the end of the year. Delbanco and nurse Jan Walker are developing detailed surveys to give patients, including whether they read the notes and found them useful, and whether they discovered errors. One question for doctors will be whether they kept private “shadow notes’’ that patients couldn’t see. The ultimate measure of success will be whether doctors and patients want to keep sharing notes at the end of the study.

Even in Massachusetts, which has been a national leader in developing electronic medical records, many doctors say they are uncomfortable with the idea of sharing their notes. Of course, patients have a legal right to obtain their paper records, which usually include notes, but they often have to wait months to get copies and must pay a fee. Online access would be easy and immediate.

“We like to be pretty candid and sometimes a note may need an explanation, like I’m not making a judgment about you when I write that you’re overweight. That’s why most of us don’t allow it,’’ said Dr. Lawrence Garber, medical director for informatics at Fallon Clinic in Worcester. Fallon Clinic, like many large hospitals and doctors’ groups in Massachusetts with electronic records, allows patients to see their allergies, problem list, medical history, medications, and appointments online - but not the notes.

Garber said he uses notes to remind him what’s happening in a patient’s life, as well as medically. Doctors also keep notes because insurers who pay doctors require them.

“I might write ‘Don’t forget to ask them about their visit to Spain.’ A certain magic happens at the next visit,’’ Garber said. “The patient thinks, ‘How great, this doctor cares about me enough to ask about my trip.’ ’’

Pulling back the curtain, he said, might destroy that magic.

At Beth Israel Deaconess, where Delbanco and Walker have spent hours discussing the issue with physicians, many are coming around.

“I am definitely going to [participate] because it’s a really interesting question and is probably going to be the wave of the future,’’ said Dr. Lisa Gilbert, an internist in a Beth Israel Deaconess practice in Lexington. “But I have a lot of concerns about it.’’

Her biggest worry, she said, is that patients who read her notes will have so many questions that she will get “daily e-mails asking me to interpret what’s in my notes,’’ which will increase her workload. Gilbert said she often uses abbreviations - “SOB’’ for shortness of breath, for example - in her comments and sometimes makes observations that patients might find unflattering - like “an obese woman.’’ Or she might write this about a purely precautionary test: “Chest X-ray to rule out neoplasm [cancer].’’

If Gilbert knows patients are reading her notes, she said she might word things “more gently,’’ but she still will use medical terms, because notes are used to communicate with other doctors involved in a patient’s care.

Gilbert said she had similar concerns when Beth Israel Deaconess decided to make lab and radiology results available to patients in their online medical record. But she believes patient access has improved care without increasing her workload. “Sometimes patients catch things that slip through the cracks,’’ she said. “People are just becoming much more savvy about healthcare and they want access to this information.’’

Dr. David Ives, who also practices in Lexington and plans to enroll in the project, said he hopes his notes will reinforce what he tells patients in his office. “I might say in my notes that a patient’s weight is up another 20 pounds and that I counseled them on the increased chance of diabetes with age and weight gain,’’ he said. “They might not hear that in the office. But if they read it, they might.’’

Mary Eisenberg, 63, one of Ives’s longtime patients, said patients should have access to doctors’ notes partly because they can catch mistakes; she caught one when she happened to see notes her neurologist kept after her surgery for a benign brain tumor several years ago. But, she said, she would not want doctors to feel inhibited by the knowledge that patients are regularly reading their comments, especially since other specialists rely on them for information.

“If a doctor can’t be honest, that wouldn’t be a good price to pay,’’ she said. “On the other hand, I like to have information about myself. If they are keeping notes on me, I’d just as soon see what they are.’’

Smaller experiments allowing patients access to their doctors’ notes generally have been successful. About 7,000 patients in the Veterans Administration medical system can read notes, and the VA plans to roll out the system to all patients. At the University of Colorado Denver, about 30 doctors share notes with 400 patients with diabetes and congestive heart failure.

Doctors “definitely didn’t keep shadow notes,’’ said Dr. Stephen Ross, a professor of medicine. “We almost all were very self-conscious the first few weeks and then we forgot about it. We might throw in an extra sentence or two to help a patient understand a note better.’’

In Boston, Partners HealthCare, which includes Massachusetts General and Brigham and Women’s hospitals, is discussing making “summary notes’’ available to patients but not the full note, said Dr. Thomas Lee, head of the organization’s physicians’ group. Partners is experimenting with providing patients with lab results online as soon as they are available and before the doctor has a chance to review them. The results “so far suggest that the sky does not fall in,’’ Lee said.

Liz Kowalczyk can be reached at kowalczyk@globe.com.