Open Records Pilot Project Looks To Reinvigorate Patient-Physician Dialogue

Allowing patients access to their personal medical records is a decades-old idea that predates electronic medical records. Yet, the idea has yet to catch on.

Susan Frampton, president of Planetree, says the association of patient-centered care healthcare providers has for the last 20 years asked its members to allow patients access to their medical records, but with limited results. Of the 150 acute care hospitals in Planetree, only about 25% have opened their records to patient scrutiny.

"It has probably been the one most challenging practices that we have asked our members to do," Frampton says. "There is a lot of fear on the part of medical and nursing staff and that translates into resistance, in part because they are afraid of the potential for litigation if the patient reads something in their chart that they don't like the sounds of."

Hospitals and physicians in three states announced this week a 12-month pilot project that they hope will rekindle the movement and measure the impact of patient access to medical records. Funded through a $1.4 million grant from the Robert Wood Johnson Foundation Pioneer Portfolio, the OpenNotes Project will evaluate the impact on both patients and physicians of sharing, through online medical record portals, the comments and observations made by physicians after each patient encounter.

The pilot project will involve about 100 primary care physicians and 25,000 patients at Beth Israel Deaconess Medical Center in Boston, Geisinger Health System in Pennsylvania, and Harborview Medical Center in Seattle.

"Patients remember precious little about what happens in the doctor's office," said Tom Delbanco, MD, a primary care physician at BIDMC and a Harvard Medical School professor, in a media release. "We expect OpenNotes will improve patient recall, help patients take more responsibility for their care, and offer an opportunity for avoiding potential medical errors as patients and families monitor and think about their care in a much more active and knowledgeable way."

Delbanco and Jan Walker, RN, an instructor in medicine at BIDMC and Harvard Medical School, recently coauthored a report in Journal of General Internal Medicine that found that most consumers want full access to their medical records.

"We learned that, for the most part, patients are very comfortable with the idea of computers playing a central role in their care," Walker said, adding that patients expect that in the near future they will be able to rely on electronic technology for many routine medical issues.

Frampton says the problem isn't convincing the patients. The problem is convincing the medical staff and nurses who fear potential lawsuits, even though hospitals that have opened their patient records are reporting a decrease in lawsuits.

"There is still this misperception that patients might see something they don't like or aren't prepared for so that could be a liability," Frampton says. "If you look at the malpractice literature, patients don't sue because there is something in the charts they don't like. They sue because they feel abandoned or that nobody is paying attention to them or things are being hidden from them."

Frampton says there is also resistance from the nursing staff. "There may be things in the charts that the nurses aren't fully prepared to discuss with the patients," she says. "Maybe it's the doctor's notes and the patient questions the nurse and the nurse may feel like he or she is caught in between."

Stephen Downs, an assistant vice president at RWJF and member of the foundation's Pioneer Portfolio, said that much of the debate among physicians about the value of open medical records "is largely uninformed by evidence."

"In the context of a physician's day-to-day work, opening up notes is a subtle change . . . but it could reposition notes to be for the patient instead of about the patient, which might have a powerful impact on the doctor-patient relationship and, in the long run, lead to better care," Downs said.

To collect evidence, physicians and patients will use a one-step intervention to share all encounter notes online. By contrasting the experience of trial participants with unenrolled physicians and patients, the researchers hope to measure the impact of OpenNotes through surveys of both groups of doctors and patients.

"While this intervention potentially could disrupt the current flow of primary healthcare, it holds considerable potential to transform the doctor-patient relationship," Delbanco said. "By enabling patients to read their clinicians' notes, OpenNotes may break down an important wall that currently separates patients from those who care for them. It may promote insight and shared decision-making by bringing closer together the unique expertise of the clinician and the unique understanding of himself or herself that each patient possesses."

Frampton says that hospitals don't need an expansive study or special advisors to open their medical records. "You just have to do it. What we have found with hospitals that have just done it is that none of these problems materialize," she says. "Essentially what it does is improve patient satisfaction and helps patients feel a sense of trust that there are no secrets being kept."

Frampton says a growing number of patients—particularly baby boomers—want to be informed about the care their getting. "They want to know what is in there, they want to know what the plan is and they want to know what the results are," she says. "People who don't want to see their charts just elect not to look at it if it is presented to them, and that choice needs to be presented."

Once hospitals clear the misperception of liability or 'how do I handle the patient's questions,' Frampton says it's a win-win situation. "The better informed the patient and the family are, the better equipped they are to ask educated questions and to be more compliant with treatment," she says.

What about start up costs?

"It doesn't cost any more money," Frampton says. "If you happen to have EMR and computer screens in the patient rooms, it doesn't cost any more to tilt the screen so the patient can see it."

Rather than cost, Frampton says, it's a matter of how you practice.

"The nurse has to go over the doctor's notes or the plan of treatment anyway, so there is no reason that can't be done at the bedside, out loud, and with the patient and the family following along and having an opportunity to ask questions. It's just about changing the way you handle the chart to be more open and do more things with the patient.