Participate in a public survey here at the OpenNotes project website: what do you think will happen when notes are made visible to patients?
Five weeks ago we wrote about the start of the OpenNotes project, funded by Robert Wood Johnson Pioneer Portfolio. The year-long project is now rolling, and a new article today in the Annals of Internal Medicine captures the current landscape and explains the study’s goals and methods.
Why is this important? In our June post we cited a 1996 Seinfeld episode, in which Kramer impersonated a doctor to help Elaine get her records – because back then, she had no legal right to view them.
HIPAA changed that, but major barriers stand in the way, not the least of which is that many doctors fear their lives will go out of control (and their patients will get scared) if patients get into the notes and don’t get it.
OpenNotes will study what actually happens, and in today’s Annals of Internal Medicine there’s an article (free – open access!) describing the study and recording baseline attitudes by patients and physicians before open access begins. This from the abstract sums up the issue:
As information technology transforms care, it might be time for doctors to share the hidden core of health records—the doctor’s note. As the public demands better care and greater transparency, should patients review and, at times, join their doctors in composing their health records?
Principal investigator Jan Walker, RN, MBA told Reuters Health “The whole idea here is to improve (and) expand the dialogue between patients and physicians.” The article continues, “knowing all the information about your health care, Walker said, should be like knowing what’s in your bank account.” What a concept! Can you imagine if your banker said “Look, this stuff is too complicated for the public”? It’s not a solid analogy – money’s not as complex as healthcare – but that’s one reason I think a second set of eyes (my eyes) can help improve healthcare.
I recommend the Annals article for its rich but clear survey of the landscape, and its intriguing presentation of the pre-study list of concerns and anticipated benefits.
And they surveyed both physicians and patients – fitting, since the investigators hypothesize that visit notes could become a document that’s created and managed jointly, a “contract of care.”
I love that they close with a section “Looking Ahead,” which has positively delicious thoughts about what could come next. A taste (do go read the rest):
Does the doctor need to do all the work in documenting the visit, or could the patient join in..?” Should patient-generated history, commentary, or rejoinder become part of the record? Might the doctor and patient sign jointly, indicating their agreement? Could such a negotiated note become an annual quality-of-care contract with measurable metrics, such as who lived up to what (25)? Should notes be peer-reviewed for quality, perhaps by both doctors and patients?
Peer-reviewed by both doctors and patients? Sounds participatory to me! And not just at the doctor-patient level – these are policy people and researchers who are thinking participatory. That’s great.
Over on the NY Times site, Pauline Chen MD has written a great short piece depicting the mood in the medical profession about this, Should Patients Read the Doctor’s Notes?
I have to say, it astounds me how ignorant of the law many medical professionals are. To be fair, a lot of them do know patients have a right to this data. But as Chen describes, a lot of them are just misinformed, and sometimes downright ignorant.
Well, I know they don’t mean to be, and we’re at work on changing that. One way or another, OpenNotes will help clear the air.
Meanwhile if you run into medical employees who are misinformed, see A Shareable HIPAA Clarification Flyer on my personal website, created with the assistance of Deven McGraw of the Center for Democracy and Technology. She’s one of the top HIPAA authorities anywhere.