Patients who read their doctors' visit notes online may be more likely to take their medications as prescribed and understand their medical issue better, a new study suggests.

Doctors at three hospitals in the U.S. opened up their medical notes to patients. The notes included not only the results of blood tests but the patients’ full medical records such as detailed descriptions of the diagnosis and treatment plan.

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The Supreme Court of Canada ruled that patients had a right to their medical records but there are barriers to accessing to information. (Orlin Wagner/Associated Press)

"At the end of the year, patients told us that they felt more competent in taking care of themselves. They felt as if they understood their medical issues better and they also said that felt as if they take their medications a little bit more appropriately," said study author Dr.  Joann Elmore, a professor of medicine and epidemiology at the University of Washington.

"The finding that patients said they might take their more medications more correctly is really important because when patients have multiple, chronic medical problems some of them are on 15, 18 different medications. It can get very confusing and hard for patients to keep them all straight. Being able to access a web portal and review the medications after a clinic visit is really helpful to patients."

For the study in Tuesday's issue of the journal Annals of Internal Medicine, Elmore and her co-authors surveyed 105 doctors and 13,564 of their patients who had at least one note available over a year-long program.

In the voluntary Open Notes system, medical centres in Boston, Seattle and rural Pennsylvania invited their patients electronic access to office notes through a secure web portal.

About 5,390 patients opened at least one note and returned surveys. Of those:

  • Between 77 per cent and 87 per cent said open notes made them feel more in control of their care.
  • 60 per cent to 78 per cent reported increased adherence to medications.
  • About one per cent to eight per cent reported worry, confusion or offence.

Benefits gained

About 60 per cent wanted to be able to add comments to their doctors' notes.

Among the doctors, about one third agreed that patients should be able to add comments.

The benefits were gained with less disruption to the work life of doctors and their staff than anticipated, the researchers said.

As one physician wrote: "My fears: Longer notes, more questions, and messages from patients. In reality, it was not a big deal."

At most, five per cent of doctors said visits were longer and up to eight per cent said they spent extra time addressing patients' questions outside of visits.

None of the doctors stopped providing access to notes after the experiment was over.

The investigators said they anticipated some patients may be disturbed in the short term by reading the notes. Some said they used "body mass index" instead of "obesity" in case the latter was considered pejorative.

But one patient responded differently to being called "mildly obese" in the notes. The patient enrolled in a diet and exercise program, "determined to reverse the comment by my next checkup."

Other doctors said they were concerned about patients who were addicted to narcotics reading the concerns. It highlights a communication area that needs more research, Elmore said. 

Elmore called open notes a natural progression of using email  to communicate with patients, saying if they can bank securely online then why not learn about their own health that way, too?

Putting patients in driver's seat

The study only covered three geographical areas where practices had both electronic medical records and patient portals.

Most participants were already experienced at using portals. Survey respondents tend to be more upbeat than nonrespondents, the researchers said.

The data showed that many apprehensions about sharing information faded with use, a journal editorial accompanying the study said.

"To be sure, most decisions have to be made by doctors, and wise patients are happy to let them," wrote Michael Melstner, a law professor at Northeastern University in Boston.

"However, passivity robs patients of a wide range of steps that they, and only they, can take toward improved well-being."

Melstner contrasted his father's silence about a tumour, mother's deceit over it and his own rage at the "enforced ignorance" to his own patient experience with a serious medical interest.

"Having experienced openness from the doctors I frankly did not fully expect, I am both confirmed in my views about the value of transparency and grateful to have moved beyond the grim days my family suffered from its absence," he concluded.

The extent of the Open Notes program is unique. In Canada, the Supreme Court ruled in 1992 that patients had a right to medical records. In practice, patients may need to pay for copying and administration fees and doctors may provide only diagnostic results rather than their full notes. 

There are efforts to become more transparent. Sunnybrook Health Sciences Centre in Toronto created My Chart, which allows patients electronic access to records.

"All physician notes transcribed by physicians to our electronic patient record are available through MyChart to patients,  for example clinic visit notes, consult note, discharge notes," said Sarina Cheng, director of health resources and patient registration in the hospital's IT department.

"Also important to note, patients can upload on their own any information from other physicians, hospitals, pharmacies, personal notes, test results from other labs etc. to MyChart. This is key."

Cheng said the system puts the patient in the driver's seat since they can keep a symptom and medication diary or even  keep track of trends in lab values if they're actively monitoring.

Toronto's University Health Network takes another approach to transparency. Patients and their families on some units are now invited to participate in rounds to ask tough questions of the medical team.

The researchers were funded by the Robert Wood Johnson Foundation, Drane Family Fund, Richard and Florence Koplow Charitable Foundation and the U.S. National Cancer Institute.

With files from CBC's Amina Zafar and Marijka Hurko