The following appeared a little while ago.
Letting Patients Read the Doctor’s Notes
By PAULINE W. CHEN, M.D.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.
Lots more here:
Here is another report of the same study.
Patients like reading their doctors' notes: study
Mon, Oct 1 2012
NEW YORK (Reuters Health) - Both doctors and patients gave high marks to a program allowing patients to access their primary care physicians' office notes online, in a new study.
Researchers at three U.S. practices found doctors' initial concerns about the extra time it would take to write out notes and answer patients' related questions didn't pan out.
And almost everyone who got access to their notes for the study wanted to keep seeing them, even if some patients were concerned about privacy issues.
"We were thrilled by what we learned," said Dr. Tom Delbanco, who worked on the study at Beth Israel Deaconess Medical Center in Boston.
"We had no clue that so many patients would read their notes, and that they would be both as enthusiastic and report so many clinically important changes in their behavior."
Delbanco led the study with Jan Walker, a nurse at Beth Israel.
They and other researchers implemented the program at Beth Israel, Geisinger Health System in Northeast/Central Pennsylvania and Harborview Medical Center in Seattle.
The current study involved 105 primary care doctors and more than 13,000 of their patients who participated in the trial of the system, called OpenNotes.
Over the course of a year or more, 87 percent of those patients opened at least one note and four in ten responded to a survey about their general experience.
Lots more here:
It seems to me creating a parallel electronic record - rather that setting up systems that do what is described here, as we plan with the NEHRS - might turn out to be a wasteful, stupid and in-effective idea.
It seems both doctors and their patients like this approach, where as we all know what most doctors think of the NEHRS proposal and all the associated issues.
Time for a rethink?
David.
