The patient, a wiry businessman in his 50s, needed a copy of his medical records to bring to a specialist for a second opinion. He assumed that getting the copies would be straightforward; the records were, after all, his.
But after multiple trips to his doctor's office and the hospital and several days of missed work, he learned otherwise. At the hospital, after spending the good part of a morning hunting down the right person to process his request, he learned that signing the requisite permission forms was not enough. He would have to pay for the copies that would take several days to put together. Those copies turned out to be incomplete, so he had to wait another few days, and pay more, for copies of the missing pages.
At his doctor's office, the staff and then his own physician had responded to his request by asking him why he even needed his records. "I told them the truth, that I wanted a second opinion, but it was more than a little awkward," he recalled. "I'm not sure if my doctor will treat me differently from now on."
"It's like they and the hospital were doing everything they could to make it harder for me," he said.
Two weeks later, dossier in hand, he swore he would never let it out of his sight. But, he added, "I can't say that this whole experience has given me a lot of confidence in my doctor or my hospital."
This patient's experience, like those of so many others who have tried to obtain their medical records, came to mind this week when I read about the long-awaited results of a study in which patients were given complete access to their doctors' notes. The findings, published in the Annals of Internal Medicine, do more than shed light on what patients want. They make our current ideas about transparency in the patient-doctor relationship a quaint artifact of the past.
Since 1996, when Congress passed the Health Insurance Portability and Accountability Act, or Hipaa, patients have had the right to read and even amend their own records.
In fact, few patients have ever consulted their own records. Most do not fully grasp the extent of their legal rights; and the few who have attempted to exercise them have often found themselves mired in a parallel universe filled with administrative regulations, small-print permission forms, added costs and repeated delays.
Many physicians also remained hesitant to share their notes, part of the patient's records, because of concerns that such openness might have harmful effects on both their patients' well-being and their own practices. Some worried that mention of minor abnormalities in laboratory values - for example, a slightly elevated prostate specific antigen or white blood cell count - could cause patients to worry unduly about some dread disease.
Other doctors feared that common medical abbreviations like "SOB" (shortness of breath) or "anorexic" (lack of appetite) could be misinterpreted. Still others imagined that writing notes with patient readers in mind would only complicate the process, adding to the already Sisyphean administrative demands of practice and inviting an onslaught of patient e-mails and calls for extended consultations.
Those fears, it now turns out, were largely unfounded.
For one year, the study, aptly called OpenNotes, allowed over 13,000 patients from three medical centers - the Beth Israel Deaconess Medical Center in Boston, the Geisinger Health System in Danville, Pa., and the Harborview Medical Center in Seattle - to have complete access to one part of their medical records, the notes that doctors wrote about them. Within days of seeing their doctors, patients received an e-mail inviting them to read the doctor's signed note on a secure patient Web site. Two weeks before their return visit, patients received a second e-mail inviting them again to review their doctor's note from the previous encounter.
After a year, almost all the patients were enthusiastic about the OpenNotes initiative.
Surprisingly, so were the majority of doctors.
Approximately three-quarters of all the doctors said that such transparency had none of the dreaded impacts on their practice. Many felt there was more trust, better communication, more shared decision-making and increased patient satisfaction. While a portion of the doctors were hesitant at the beginning of the study, not a single one opted to stop sharing notes with patients after the study ended.
"Their fears simply never materialized," said Jan Walker, one of the two lead authors and a registered nurse and health services researcher at Beth Israel Deaconess.
There were several surprising results for patients, as well. While many said they felt more in control of their own care, up to almost 80 percent of the patients said that reading their doctors' notes helped them to take their medications more regularly and better follow their doctors' treatment recommendations. Furthermore, having access to their doctors' notes became so important that nearly all of the patients said any future decisions regarding doctors or hospitals would be predicated on being able to access their records easily.
All three hospitals in the study are working to allow those patients who participated to continue to have access to their doctors' notes. Beth Israel Deaconess, which already allows all patients to view their test results on a secure patient Web site, plans to expand the program even further over the coming year, becoming one of the first hospitals in the country to allow all patients open access to notes from not only their doctors but also their nurses and all other health care providers.
And in what may signal even wider adoption of this new vision of transparency, representatives from several national health care groups, including the American Medical Association and the American Hospital Association, will be meeting in Washington next week to discuss the study results and ways of implementing similar programs in other institutions.
"On the one hand, we call this the 'new medicine,'" said Dr. Tom Delbanco, the other lead author and a primary care physician who is a professor of medicine at Harvard Medical School. "But we're also just giving patients what is already their right."
He added: "It's as we say: Nothing about me without me."