[acb-hsp] Letting Patients Read Their Doctor's Notes

[peter altschul]

Letting Patients Read the Doctor's Notes
  By Pauline W.  Chen, M.D.  New York Times October 4, 2012
  The patient, a wiry businessman in his 50's, 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 medicine1'" 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."