Hospital system tries letting patients read physicians' notes

Electronic medical records and a push for consumer involvement make it more acceptable -- and imperative -- to release more information, say Beth Israel project backers.

By Pamela Lewis Dolan — Posted July 6, 2009

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Tom Delbanco, MD, conducted an experiment in the 1970s in which he asked patients to take their own notes during clinical visits and compare them to their physicians' notes.

The experiment didn't last long, he said, because when patients asked other physicians for notes, "doctors thought the patients were crazy," he said. "They literally said, 'I am calling a psychiatrist.' "

Now, more than 30 years later, Dr. Delbanco, an internist at Beth Israel Deaconess Medical Center in Boston and professor of general medicine and primary care at Harvard Medical School, is trying again. He is one of the leaders of an experiment at Beth Israel that allows patients unfettered access to their doctors' notes made in relation to their visits. The idea is to see how granting real-time access to clinical notes will change the dynamic between physicians and patients.

"In spite of a lot of enthusiasm ... no one really knows what will happen," said Jan Walker, RN, an instructor of medicine at Harvard Medical School and the other leader of the project. "What I hope will happen is that not much will happen. Some patients will look at the notes, and there are some patients who may not look at them at all."

As part of the experiment, there will be a physician-only portal that doctors can use to record their private thoughts on each patient. The investigators also will measure how much and for what reasons the physicians use the private portal.

"If I were to venture a guess, I'll bet [the private portal] won't be used that often," Walker said. "But we're going to find out."

Easier access

Since Dr. Delbanco first tried making doctors' notes available to patients, laws have changed to give patients access and ownership of their records. But more than that, the rise in the use of electronic medical records also has made obtaining clinical records less of a burden, particularly if those notes are put into a patient-controlled personal health record. And in recent years, there has been a push for more collaboration between physicians and patients through the consumer-directed health care movement.

Still, the year-long project, called OpenNotes (Beth Israel has copyrighted the name) makes some doctors a little nervous about what might happen when it begins, most likely by year's end. The system is recruiting the 100 physicians it says it needs, at minimum.

When Lisa Gilbert, MD, an internist at Beth Israel, was asked to participate, her initial reaction was, "No way. What a bad idea," she said.

She is concerned about the extra work that patient access to notes might cause, figuring they would raise more questions. She also is concerned that seeing the notes could raise patients' anxiety levels.

Project leader Dr. Delbanco said Dr. Gilbert wasn't alone. Just the announcement of the project has created a buzz, for and against.

Because of the potential for this to be a "landmark study," Dr. Gilbert changed her mind. "I want to be a part of this even though I'm not sure I'm going to like it," she said.

Project backers said patients already can ask for copies of the notes. What the project does is make the process easier for them -- and for doctors.

"I think there is a really big difference between giving someone the legal right to obtain something with a fair amount of difficulty, and actually making something a routine and an easy part of receiving care," said Stephen Downs, assistant vice president of the Health Group at the Robert Wood Johnson Foundation, which provided a $1.5 million grant for the experiment.

Downs said the project will provide "an opportunity to open up a much more collaborative relationship" between physicians and patients.

David Ives, MD, an internist and infectious disease doctor with Beth Israel, agrees that the experiment, in which he is a participant, will help patient education and participation.

"When people are actively involved, they are probably more likely to be healthier and more likely to ask, 'Why haven't I had X or Y?' or, 'Why can't I do A or B?' which is better than waiting for someone to tell them." And, he said, it will help physicians correct any errors patients point out.

Rudolph M. Krafft, MD, director of family medicine residency at St. Elizabeth Health Center in Youngstown, Ohio, is not a participant in the Beth Israel project. But he is switching to an EMR system, which he believes might lead to more patients looking at clinical notes.

Many physicians write down their thought processes, he said. "I can see patients requesting more testing because the physician happened to put in there that this [problem] might be [diagnosed as] something else," Dr. Krafft said.

Rich Parker, MD, medical director and internist for the Beth Israel Deaconess Physicians Organization, said there are some things that should be kept in the notes, away from patients.

"In any field ... it's not practical to tell your client every single thing you are thinking. And frankly, I don't think they want to know every single thing you are thinking," said Dr. Parker, who is participating in the experiment.

Note-taking could change

Attorney John Redmond, a director of the Virginia Beach, Va., law firm Hancock, Daniel, Johnson & Nagle, specializes in defending medical liability cases. He said granting patients real-time access to their records could invite more claims. Not only will patients be able to see more things that raise red flags, but they also might get upset when physicians are slow to answer questions the notes might raise.

Dr. Krafft said that when he goes over notes with patients, the majority of his time is spent explaining what the note means. Because one of the goals is to create more collaboration between physicians and patients, investigators think that doctors might just end up writing the notes in more of a layman's style.

Some patients will find issues in the notes that they will bring up with their doctors, Dr. Delbanco said.

"But for every patient who does that and, in a sense, makes more work by doing that ... there is another patient who was going after the doctor for this and that because they weren't sure what the doctor thought or was saying. ... Now that they read the note, they won't be doing that."

Dr. Gilbert is not so sure. After word got out to her patients that she was going to participate, she received e-mails from a handful of them telling her how excited they were. "I had to groan a little bit," she said.

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Write notes as though patients are reading

Physicians' clinical notes usually aren't as easily accessible as Beth Israel Deaconess Medical Center is making theirs, so if a patient is asking for his or her records, there is likely a specific reason. Therefore, simply making copies and handing them off is probably not a good idea, experts say.

"It's very important to go through it and be extremely open and transparent to say this is what was written, this is what was said and this is what was documented, and this is the rationale behind it," said Neal Patel, MD, MPH, a pediatric critical care physician and chief medical informatics officer for Vanderbilt Medical Center in Nashville, Tenn.

Many problems also can be avoided by assuming that everything you write will be seen by the patient at some point, experts say.

Dr. Patel said pediatric physicians on rounds in the ICU often invite the parents of patients to listen in during discussion.

"It's amazing how the tenor and the tone becomes a lot more professional when you have people listening to the conversation," Dr. Patel said. That same level of awareness will result when physicians realize that more patients will be reading their notes, he added.

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