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.