Texas doctors lead open-notes movement

M.D. Anderson Cancer Center patient Ed Steger, now has access to his medical records, including doctor's notes, online through a hospital website. One notebook of paper copies contains 14 months of his records. less M.D. Anderson Cancer Center patient Ed Steger, now has access to his medical records, including doctor's notes, online through a hospital website. One notebook of paper copies contains 14 months of his ... more Photo: Melissa Phillip Photo: Melissa Phillip Image 1 of / 1 Caption Close Texas doctors lead open-notes movement 1 / 1 Back to Gallery

Texas doctors are at the vanguard of what U.S. researchers say is an inevitable revolution to make consultation notes and other records easily accessible to patients.

The idea, at odds with the decades-old attitude that medical records belong to doctors because they're the only ones trained to interpret them, is being tested in an ongoing national study that has already confirmed that patients want to read their notes but most doctors are still resistant.

"Many doctors aren't there yet, but this is going to happen, this can't be stopped," said Jan Walker, a nurse at Harvard Medical School's Beth Israel Deaconess Medical Center in Boston and the study's lead author. "In today's more transparent society, patients want this - and it should be to everyone's benefit."

The change is being pioneered at the University of Texas M.D. Anderson Cancer Center, which since 2009 has maintained online portals where patients can call up the typed notes their doctor took during their appointments as well as the rest of their records. Such efforts are in the process of being implemented at all six UT health campuses.

Editorial support

Two UT doctors involved in the open-records policy contributed an editorial that accompanies a survey on the subject in the Annals of Internal Medicine, part of Walker's team's study. The doctors wrote that the M.D. Anderson policy has caused no reported anxiety or confusion among patients - fears frequently cited by doctors in the survey.

Patients at any hospital can legally obtain their medical records, which don't always include the doctor's notes. But those records are typically difficult to obtain, often available only much later, at a charge, in some obscure office. One head of a nonprofit patient advocacy group said medical records "belong to patients but are treated like classified documents."

The attitude dates to the paternalistic attitude of a previous era, when doctors doled out patient information on a need-to-know basis. Things began to change with the patient autonomy movement of the 1970s and the Internet in the 1990s, but Walker's team weren't aware that a hospital already had an open-notes policy until M.D. Anderson doctors contacted it when they heard of the study.

M.D. Anderson doctors wondered what the researchers thought needed a study.

"There have been no adverse consequences and generally positive feedback from patients and physicians," M.D. Anderson's Dr. Thomas Feeley and the UT System's Dr. Kenneth Shine wrote in the Annals editorial. "(Patients) are more informed about their care plan and diagnostic results and ask smarter, more focused questions."

Patients enthusiastic

That was the thinking behind Walker's survey, which asked more than 250 primary-care doctors and their 37,000 patients at hospitals in Boston, Seattle and rural Pennsylvania what they thought of the idea, then enrolled those doctors who liked it in an experiment in which their notes are available online. Feedback from the experiment is still being collected.

The pre-experiment survey found more than 90 percent of patients were enthusiastic about doctors providing easy access to their records. Fewer than 15 percent expressed any concern about understanding them.

There was decidedly less support among doctors - 114 agreed to make their notes available online; 140 declined. In the survey, as few as 16 percent of nonparticipating doctors thought opening their notes to patients was a good idea. Among participating doctors, between 70 percent and 80 percent liked the idea.

Among doctors' concerns were that opening their notes to patients could prove time consuming, prompting a deluge of follow-up questions. But Feeley said the M.D. Anderson policy actually reduced follow-up questions because patients now have clear explanations of their condition.

Still, doctors in the survey worried about the effect of their notes on obese, substance abuse, cancer patients and psychiatric patients, and observers said if the idea takes off they expect doctors will modify what they write accordingly.

'Engaged and positive'

One cancer patient who doesn't share such concerns is M.D. Anderson patient Ed Steger, who's had surgeries to remove his jaw bone, a large section of his upper esophagus, part of his soft palate and his tongue since being diagnosed with advanced head and neck cancer in 2005. Contrary to the idea what's written might depress him, he says they have just the opposite effect.

"They keep me engaged and positive," said Steger, 59, who raves about the ease of obtaining records online now, compared to the print versions he'd used to walk to retrieve. "I cannot recall anything in them that ever surprised me, but if I don't understand something I just go to the Internet or ask the doctor the next time I see him."

Walker said the research team will likely beat the drum of open notes and records. She noted that after their experiment ended, the three hospitals in the study all decided to keep the open notes policies in place.

todd.ackerman@chron.com