Slashdot Mirror
Putting Medical Records Into Patients' Hands
Hugh Pickens writes "Roni Caryn Rabin says patients have a legal right to their medical records, though access can prove difficult. But what would happen if patients were encouraged not just to see their medical records but to take them home, study them and really own them? A research collaboration called OpenNotes set out to answer this question, publishing the first results of a study on physician and patient attitudes toward shared medical records and demonstrating that for patients, at least, shared medical records seems to be an idea whose time has come. 'That's the great challenge in medicine: getting patients to be more active in their own care,' says Dr. Tom Delbanco, a principal investigator of the study. 'What we're doing is opening the black box and letting you look inside.' Dr. Delbanco and his colleagues recruited more than 100 primary care doctors who were already using electronic health records to volunteer to share their medical notes with patients. Patients were enthusiastic: 90 percent thought they would be more in control of their care if they saw the notes. They weren't worried about being confused and most said seeing the record would help them take better care of themselves helping them better remember their treatment plan, understand it and take their medication. The goal is to engage patients more fully in their own health. 'Knowledge is power,' says Jan Walker, the study's senior author. 'A patient goes to the doctor only once in a while, but in between visits, you're making all kinds of decisions that affect your health every single day.'"
Why was Google not able to make this successful? Is it because people aren't interested in being accountable for their information?
Seriously, if patients take the records home with them, then what. I don't personally have any knowledge that would allow me to understand the records. Most folks probably don't know how to secure them properly.
Sure people do have the right to see those records, but that doesn't necessarily mean that they should be encouraged to take them home with them. Of course make it clear that they can look or take copies if they like, but encouraging it seems like a poor idea.
"They weren't worried about being confused and most said seeing the record would help them take better care of themselves helping them better remember their treatment plan, understand it and take their medication."
I had to laugh at this finding. I am a non-clinical worker in the healthcare industry and hold a post-graduate degree. Still, it takes a good deal of effort for me to fully understand a typical raw medical record. Assuming you get past the jargon used in most records (no small feat), you then have to see the big picture, which may or may not be spelled out in the record.
One huge issue is that providers have no motivation to chart with the idea that a patient will end up reading the record for substance. The primary motivation for most providers is to create a record that (i) will be understood by other highly educated medical professionals and (ii) can serve as the proper basis for creating a proper bill. I cannot think of a system that is less geared toward creating material that an average patient can understand (except, perhaps, if the record were in cuneiform).
I recently negotiated the purchase of a software program that takes a physician's instructions to a patient and suggests edits such that a 6th grader could understand the instructions. All written patient instructions are being run through this system at our hospitals (subject to ultimate review by the doc before they are handed to the patient). But these same 6th-grade level readers are now going to glean substantive meaning from a raw medical record? This is either evidence of how few people have reviewed a raw medical record or, alternatively, that hope springs eternal.
As a doctor, I really think of your medical record as mine: what I gleaned from your complaints, what exams I did, who I talked to, and what I thought was going on and what to do about it. I know you are paying for it, but I'm the one doing the work and putting all that medical school to use.
That said, I think you should have access to it, for free, and modern electronic health records allow that: once I review a result or record I can release it so you can look at it online. I also now document in my charts with the idea that the patient or family member might read it, so in addition to the technical detail I write the plan and diagnosis in as plain language as possible, and send patients home with this at each visit. (More than half immediately lose this paperwork, in my experience.) These systems, naturally, come at significant, expense and require a fair amount of upkeep, so they are mostly available only at larger practices.
Having worked previously in a developing nation where patients were responsible for keeping their own medical records (on 5 x 8 index cards), I'm glad we don't do it that way here (I'm n the US). I need a secure copy of what's been done to you and what you're taking, and recall having had a lot of trouble reconstructing lost information from the memory of illiterate folks or damaged records that had gotten submerged in open sewers and whatnot.