Putting Medical Records Into Patients' Hands 211
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.'"
Re:And do what with them? (Score:4, Insightful)
This is kind of what worries me.
The internet provides a great deal of medical information, however you still need someone with experience to relate it to a specific case. Patients trying to make sense of their own medical info combined with the amount of information out there (some good, a lot bad, some terrifying) may lead to some issues.
Could go both ways (Score:5, Insightful)
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.
Re:And do what with them? (Score:5, Insightful)
They are much safer when they're not in the hands of people who have no real use for them.
What a remarkable statement to say. There are two obvious counterarguments. First, it's your health. Even if you can't understand much of it, you have a huge stake in what's in there and what you can understand may have significant health benefits for you. That's a big, real use of those records.
Second, I doubt it's that hard to make use of your own medical records. You don't have to have the extensive knowledge of a doctor in order to keep track of your problems. The knowledge problem is far more limited and you have a head start in understanding in that you are experiencing the medical conditions described in your medical report.
Re:And do what with them? (Score:5, Insightful)
I don't personally have any knowledge that would allow me to understand the records.
So what? You have the internet, a brain, and you're experiencing directly the medical conditions described in the records.
Re:And do what with them? (Score:5, Insightful)
Re:And do what with them? (Score:5, Insightful)
I don't need all the details of my medical history at my fingertips. I just need to follow the advice of my doctor. If I don't like their advice, or it's not successfully addressing a particular medical issue, I'll seek the advice of another medical professional (who will request a copy of my records). I know enough to know I'm not qualified to be a doctor (let alone my own doctor).
Re:Sure, I'll take 'em (Score:5, Insightful)
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.
Re:And do what with them? (Score:4, Insightful)
That's an issue with the doctor writing pejorative terms in the chart. If you look at really old records (like before we told people they had cancer) you would get verbiage that would make you freeze in your tracks.
Any doctor that writes "McDonalds addiction" in the chart deserves whatever hassle they get. It's stupid and unnecessary. Yep, there are docs that do that but not very many. And if you are their patient, you'd do well to understand where this clown is coming from and find a better doctor.
Re:And do what with them? (Score:0, Insightful)
your theme is good - THINK.
I may be an engineer, but I know B.S. when I see it. And the medicos of full of it. My wife has always been healthy. She started seeing physician after reaching 40 - and out came the 'treatments'. Went throung 5 years of increasing misery. Forced to stop medical 'care' when we both lost jobs. Was rapidly re-employed, but after several months noted she was returning to previosly healthy self. We are now over 50, neither, other than dental, has recieved med treatment for over 5 years and are doing good. Fuck you greedy incompetent doctors. Fuck you incompetent uncaring nurses. Fuck you bottom-line insurance companies. And Fuck You pharmacons.
Our only concern is cancer detection. But the odds are in our favor due to lifestyle and genetics. So we roll the dice.
Re:And do what with them? (Score:4, Insightful)
You come in with a document that says "takes 4 80 mg Oxycontin twice a day for back pain" and ask me for a refill, I am rather likely to check the veracity of the claim. You come in with a document that says you had your gall bladder removed, I just might believe you (but I'd look for the scar, if appropriate).
We're not that stupid.