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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.
Thought maybe they were implanting chips with health records into patients' hands.
Mixed views on this one. I can see the reasons why it might be a good thing. I'm also conscious, however (having spent quite a lot of time around doctors back when I was doing summer work in a general surgery in the late 90s) that one of the big problems with giving patients too much information is that they will take it and - lacking medical training - use it to jump to the wrong conclusions, imagining all kinds of ailments that they just don't have.
Certainly, there are no end of cases of people looking up symptoms on the internet and deciding that they have a combination of ebola, bubonic plague and some obscure disease that only affected horses in 13th century Denmark, when in fact they have the flu. It wastes a lot of medical time and effort that would better be spent elsewhere.
That said, you do also hear the occasional stories of missed diagnoses of much more serious illnesses. Like I say - could go either way. I suspect that it would need to be accompanied by a lot of work on putting information into the appropriate context and providing advice on interpreting it, which could be expensive.
Personally, my family found it useful while living in France, where having copies of your medical records are your responsibility. For someone like myself that saw the doctor 1 or 2 times a year, it was convenient to go back to him and say, yah, last time we tried these two medicines for my cold, and this one worked, can you prescribe this one, etc. Nothing complicated, but it helped to make a bit of a closed loop on the treatment history if I was actively involved in the treatment history. Just my experience.
If that pisses you off, just wait until you realize you've been seeing a chiropractor.
"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.
My sister works as a Medical Assistant in a very small family practice. In fact, the practice is so small that my sister and the doctor are the entire staff. They hire an electronic medical records service from "the cloud". This service makes it possible for every patient of their practice to have on-line access to their records. The records get updated in near real-time because both my sister and the doctor use tablet computers. The tablets go everywhere, even the exam rooms, so as notes are taken they go directly to the patient's records.
I have not heard any details about how many of their patients actually USE this service. I would bet no more than half, since many of their patients are geriatric cases - too old to want to bother to learn how to use a computer.
My sister and the doctor both are very much in favor of this kind of access to medical records. They think it makes their job easier. It gets more details to the patients and it does not tie up the phone just to be reading records to someone. It also lets patients remind themselves about treatment decisions that have been made.
It requires an ActiveX object to access the records and so is useful only for Internet Explorer users. The vendor is supposed to be working on a way for Mac users to get access as well, but they are not there yet. Firefox and Linux? Ferget it! Heck, they just added support for IE 9 and 64-bit Windows a few months ago.
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.
Good points, Doctor. However, I do take issue with your opening comment. Yes, your training resulted in the work being done, but I AM the one paying the bill, and it is MY BODY. Yes, you are doing the work, but only because I am paying you for that service.
It's no different than if I take my car to the shop, list some complaints, and they fix it. I fully expect to be told everything they did, and why, and their diagnosis, so I can keep a record of it. Why? Several reasons. First and foremost, I'm paying the bill and it's my car. And, with that information in hand, I can have the confidence (or lack thereof) that the problem was fixed and why. And I have that information in case I want to do further work myself, or take it to another garage, or have that information with me if I'm traveling and it needs work to show a mechanic somewhere else. Each of these examples is directly applicable to medical records for the same reasons. If I think my doctor screwed up, I can take my records and show them to another doctor. Or if I'm traveling and something bad happens, I can have those records to show a doctor wherever I'm at. Etc. etc. etc.
using electronic health records to volunteer to share their medical notes with patients
How much storage space will you need for that many pages of "you really need to lose weight"?
Does it come with a NAS?
My wife practices at a major medical center that has adopted this approach. Most of her patient population are non-English speaking immigrants that have no use for this piece of paper and so they tend to just throw them out anywhere convienent or leave them in the waiting room.
What's worse, is that my wife is required to give this to them at the end of their visit. This means that my wife spends almost the entire visit on the computer entering the notes instead of providing personal care to the patient. EMR sounds great in theory, but in reality it turns highly intelligent, highly educated individuals into data entry clerks. Great for the bean counters and the malpractice lawyers, lousy for the practitioners and the patients.
Average Intelligence is a Scary Thing