JENNIFER LUDDEN, HOST:
When you visit a doctor and he starts - he or she - starts jotting down notes in your records, do you want to know what they're writing? Over 90 percent of patients do, according to one recent study. But doctors are not as keen on the idea. Many physicians note insights and comments they may not have shared with patients. They report concern that revealing this information could leave a patient confused or frightened.
Patients, if you have access to your doctor's notes and medical records, what difference has it made? And, doctors, is this a good idea? Call us at 800-989-8255, or send us an email, email@example.com. And you can join the conversation at our website. Go to npr.org and click on TALK OF THE NATION.
Alice Park is a staff writer at Time magazine, where she covers health and medicine, and she joins us now from a studio in New York. Welcome to TALK OF THE NATION.
ALICE PARK: Thanks for having me.
LUDDEN: So patients have long been able to see their medical records, but it's not always easy to get access, especially to these doctors' notes. Why is that?
PARK: Well, a patient's record belongs to the patient, really. But I think it's really our health care system which has evolved into this, you know, paternalistic doctor-knows-best kind of structure where the doctor has been sort of the gatekeeper of all the medical information. And, you know, the reasons aren't all nefarious.
There's a reason why doctors sort of feel like they need to interpret the medical information that's in a patient's chart, and it's because it's incomprehensible to most people: test results, you know, whether results fall into normal or abnormal ranges. You know, you don't want to be looking at those on your own and trying to figure that out.
So I think what started out with good intentions - you know, doctors trying to help patients better understand their health - has really turned into this system where doctors have kind of kept control of the information, and patients have felt that they don't have a right to see it.
LUDDEN: So, I mean, there are logistical obstacles in the way? What happens if someone says, I want my records?
PARK: Well, I think before records became electronic and digitized, there were some very physical obstacles because, you know, it became an issue of having the patient look at their chart and the information in the chart in the presence of the doctor just to ensure that, you know, it wasn't falling into wrong hands.
You know, a doctor wouldn't want to sort of put a chart in the mail to someone because you just don't know where it will go and who will see it. But I think once charts became digitized, this idea of giving patients access to what's in there and having them look at test results and look at, now, doctors' notes has become much more realistic.
LUDDEN: So you reported on a study that asked patients and doctors about this idea of access to these notes and records. Why did patients report that they wanted to see their records?
PARK: I think the reasons are many, not the least of which is it's their information. So, just on principle, it makes sense that they would want to see it. Secondly - and these are sort of some of the interesting reasons that emerged from this survey - patients also said that if they saw kind of what their doctors were writing about their visits that it might even motivate them, in some ways.
Anecdotally, some of the researchers that I talked to said, for example, patients who are overweight or obese and who have been told to, you know, try to lose weight, they said that none of that kind of really sunk in until they saw in their chart and saw their doctor's notes that, at each visit, how concerned the doctor was about the weight and about what sort of, you know, subsequent problems might arise from being overweight. And it motivated them to actually do something about it.
So it can have some very positive effects, too, and patients really reflected that in their answers to why they wanted to see their chart, was because they really wanted to know what their doctor was thinking, and they thought that that would help them better understand also what was going on with their own health.
LUDDEN: And why did some doctors say that - many doctors said they were OK with this, but more, as I take it, said they had some concerns. What were they?
PARK: These concerns ranged from some very practical ones, which were that, you know, the more, obviously, patients are getting information, the more questions they're going to have. And, you know, many doctors already feel pressured enough by the limited time that they have to spend with patients, and they feel that they might be burdened even more with additional questions from things in their chart that they may not have to worry about.
But a more serious concern has to do with how patients interpret the information in the chart, and doctors legitimately were worried that they might have to censor, kind of, some of their medical best-guesses about what might be wrong with a patient or what kinds of tests they need to do in order to rule out certain conditions, that they don't want to alarm the patient, so that they might censor some of those notes that they put in there if they knew the patient were looking at it.
LUDDEN: Hmm. Let's get a listener in, here. Anthony is in Sterling, Illinois. Welcome.
ANTHONY: Yes, hello. Thank you for taking my call, and I really am enjoying this program. I actually saw a doctor. I'd been having some ear troubles for quite a while, and we couldn't figure it out. I've been to several different ENTs and - up to Mayo Clinic in Rochester. I saw a very - a real specialist in the field at Northwestern in Chicago. He's an otoneurologist. And actually, his policy to mail patients, he said - during my first visit, he said it is our office policy to mail all patients their records. About a week after your visit, you'll be receiving, in the mail, all the records from the visit today and all - the results of all the tests.
And, you know, these are highly specialized tests that we did. It was a lot of testing. And I really felt it just helped so much. I really felt that - I could be more my own advocate, and I just so appreciated that. He was a wonderful doctor, anyway. But the fact that he did that, it just spoke so - to me, it really spoke highly of his practice...
LUDDEN: And, Anthony, did you get any clearer sense or different sense of what was going on with you than you'd had just meeting him in person?
ANTHONY: Absolutely, because, I mean, I was - first of all, I know a lot of doctors don't like us to do it, but I was able to Google some things, find out more about the tests that he did. They were reliable sites. You know, I made sure the sites that I checked were reliable. And I was able to learn more about the tests, and then yes, I was able to follow up. Yes, it is time consuming for him, but I did, you know, very briefly email him a couple of questions that I had. And he very, you know, briefly emailed me back a couple of days later.
It was great. It was like there was more of an ongoing communication that we had, and he was very happy to answer my questions. And absolutely - and, in fact, I was referred then to another specialist, and my troubles have cleared up. My pain is gone. I was having a lot of pain, and it's gone now. And I just think that was a big part of it. I really just cannot speak highly enough of that policy. It was the first doctor I'd ever had that did that. I've never heard of it before. And I don't know whether it's a trend that's increasing, but I just - I can't speak - it was great. It was wonderful.
LUDDEN: Anthony, thanks so much.
ANTHONY: Thank you.
LUDDEN: Alice Park, there's a happy story of access to medical records.
PARK: Well, that's the idea. That's what doctors hope will happen. And indeed, a lot of hospitals - and even private practices - are starting adopt this policy where they will, you know, send test results and allow patients access to their records. What the issue was here with this study in particular were the doctor's notes, and these are notations that physicians make to themselves mostly so that they can make sure they go through almost a checklist of things that they need to consider when they're looking at a particular patient's symptoms. So...
LUDDEN: And what kind of things do they note? What's in those notes?
PARK: Well, it can range - and my father's a physician, so I can - I sort of have second-hand knowledge of this. But, you know, they range from really just running down, for example, this patient - the caller who was just on, you know, if it wasn't clear what was causing his ear problems and his pain, they would just run down, you know, could it be, let's say for example, a tumor, cancer? Could it be, you know, an infection? Could it be inflammation? They would just run those things down and - just to make sure themselves that they are testing for all of those things.
LUDDEN: You know, we have an email from a Dr. Matthew in Cincinnati. He writes: I would not want all of my patients to see their notes simply because most will really interpret them in negative ways. It would cause many to become very dramatic and misunderstand the true meaning of his notes. Honestly, he writes, even when I'm - I talk with someone one on one, there's a lot of explaining done. Seeing just a few things in notes is only going to cause extreme confusion. Is that a typical sentiment there from this survey?
PARK: Yes, and it's a very legitimate one. Obviously, medical information is - it, you know, requires a lot of interpretation. Clearly, something like this, a change like this is not going to happen overnight, and it's not going to be smooth. You know, there will be a transition period where I think both doctors and patients will sort of have to feel out what works best for them. And doctors, I think, acknowledge that they'll also have to perhaps adjust the way that they make notations in patients' charts, knowing now that patients will be increasingly accessing them and reading them. I think one actually amusing example that a physician told me was that in medical parlance, the acronym SOB actually means shortness of breath.
(SOUNDBITE OF LAUGHTER)
PARK: But it could be misinterpreted by a lot of patients as meaning something quite different. Yes. He would be changing doctors there.
(SOUNDBITE OF LAUGHTER)
LUDDEN: You've written that more patients are asking for transparency. Is this because of the digital age, things are, you know, electronic now? Or is there something else going on?
PARK: Well, I think there are a lot of factors behind that. One is technological, that it's just possible now. It's more possible. It's easier. Second is, you know, our culture is changing, as well, where we are becoming more transparent, I think, in many different aspects of our lives. One thing that surprised the researchers of this study, as well as many of the physicians involved, was that up to 20 percent of patients said that if they were able - you know, if they had access to the doctor's notes and their charts, they would actually share them and, you know, show them to friends and relatives on their own.
This surprised doctors a lot who thought that the patients would want to keep these types of things private. But I think there's a lot of different factors leading into kind of this general sense that things should be more open and transparent.
LUDDEN: All right. Let's take a call. Dahomey(ph) is in Columbus, Ohio. Welcome to TALK OF THE NATION.
DAHOMEY: Hello. Thank you for having me on the show. I was calling - I actually have two perspectives. One, I am a psychologist, but also I was telling your screener about an incident with my cousin. But as a psychologist, the way I look in my clients' records and the way I treat them is I actually assume that my clients are actually going to ask for them and be able to see the records. And I think that transparency is really important, because patients want to know what's being said and what's in their records, because that's going to go to insurance, if it goes to insurance companies, if it goes to any other people.
In general, though, when I do give reports, though, I do get a release of information. If my clients are looking for their private records to be released, I sit down with them or I'll have a conservation with them and tell them very directly what the information that I'm going to be releasing is and also let them know the implications of that. So if I'm releasing to their new employer that they have depression or if I'm releasing to a new employer a certain type of record, what type of implications that may come along with it.
And even on most cases, I actually encourage my clients to think about, instead of releasing their full client record with each single note that we have, a summary about the information that they - a summary of our work together, because that actually can be much more nuanced and kind of probably fits their needs better.
LUDDEN: Hmm. Dahomey, thanks so much for the call.
DAHOMEY: No problem.
LUDDEN: Alice Park, Dahomey says, as a psychologist, she assumes her patients will see these records. But you wrote that when it comes to psychiatry, I think, that there are some reservations.
PARK: There are some concerns. I mean, obviously, this is not going to be easily implemented across all, you know, different disciplines. And psychiatry, in particular, is an area where doctors may - and patients may need to sort of have some time to work out how the information is made available. Psychiatrists, in particular, are also noted that if they were - you know, there's a lot of mental illness conditions where denial is an issue. And for a patient to see a potential diagnosis or a physician's impressions of the patient's mental state may not be helpful, and it may actually be harmful. So clearly, that's one area where things need to be worked out better.
Another one that was brought up was cancer diagnoses. So there are some cancer hospitals that noted that, for example, the patients are not allowed to access their records until after seven days of a biopsy. And that gives the doctor time to meet face to face with the patient to discuss the results rather than having the patient see it in black and white for the first time.
LUDDEN: You're listening to TALK OF THE NATION, from NPR News. We have a couple emails here. AmigaDragon sent a tweet with a suggestion that you should view records with a doctor or nurse to interpret them with you. Allow the access, but do it together.
Jennifer in Cypress, Texas, writes: My husband's current doctor dictates his notes into a little tape recorder while we're in the exam room. At first we found it odd, but now it makes us feel like we're more empowered in working with him. And she writes that they've actually corrected his dictation occasionally as he said something different than what we just heard or understood. And we've been able to clarify everyone's understanding. So is there sort of a fact-checking benefit here?
PARK: There is, and I'm glad the - that email came in, because some of the physicians did mention that they're starting to now actually dictate or show the patient the notes as they're going into the chart. And as this caller notes, in some cases, they're actually correcting what's going in there because, you know, doctors are rushed and they are only humans, so they may make errors in family history or, you know, noting some physical results. So it can be helpful in some ways.
DAHOMEY: And this is just an example of how it's a give and take. And, you know, the system may not be perfect the first time around, but as doctors and patients work together, they might find a way that this kind of openness and transparency can help both.
LUDDEN: So you've written that some of the main concerns are that the access to notes will take up more of a doctor's time, the patients will have follow-up questions and there will be a lot of back and forth, or some concerns about malpractice suits. You write that some places have actually mandated open access, and what's happened there?
PARK: Well, they've actually seen that this has not been the case, so that their premiums have actually gone down. They have not seen a surge in malpractice cases. And the doctors are actually reporting that in most instances, they're actually not spending extra time - the extra time that they anticipated they would, because I think one of your callers mentioned that he was doing some Googling on his own and research on his own, and they were sort of using the information in their charts as a springboard for learning more. And all of that learning did not necessarily involve taking more time from the doctor.
LUDDEN: OK. Alice Park, do you - has this made you change your attitude? Do you read your notes more now, your doctor's notes?
PARK: I actually haven't, but I think this is - I think I will. This is a good idea, and I think transparency is a good trend in this area, in this field, in medicine, because our sense that the doctor is sort of the gatekeeper of all this information is probably an old-fashioned one. And while it's not going to be easy, I think it's a good trend.
LUDDEN: Alice Park at Time magazine, thank you so much. This is TALK OF THE NATION, from NPR News. I'm Jennifer Ludden, in Washington. Transcript provided by NPR, Copyright NPR.