JOE PALCA, host:
Next up, your medical records. You have a legal right to get them. You can get copies of them from your doctor, and you can request changes to them if they're inaccurate.
But if you request a copy of your medical records, there's one part many hospitals don't routinely include: the doctor's notes from your visit. You can get those notes, but it can be costly, take weeks, or may - you may even be required to review them in the presence of a doctor.
Well, now, a new project is underway to get those notes into your hands more easily through a secure online portal. It's a one-year trial of something called Open Notes, with 115 primary care physicians and 25,000 patients participating in Boston, Seattle and rural Pennsylvania. But is this something that doctors and patients will find useful, and will it improve your health care? That's what we're going to talk about. Do you think it's something you'd want, or maybe not? Give us a call. The number is 800-989-8255. That's 800-989-T-A-L-K.
And joining me now are two doctors involved in the Open Notes trial. Dr. Tom Delbanco is a professor of medicine at Harvard Medical School. He's also a researcher, teacher and practitioner at Beth Israel Deaconess Medical Center in Boston. He joins me in the New York studio. Welcome to SCIENCE FRIDAY, Dr. Delbanco.
Dr. TOM DELBANCO (Professor, Harvard Medical School): Good to be here.
PALCA: And also, Sara Fazio is an associate professor of medicine at Harvard Medical School. She's also a practitioner of general medicine at Beth Israel Deaconess Medical Center in Boston. She joins us by phone. Welcome to SCIENCE FRIDAY, Dr. Fazio.
Dr. SARA FAZIO (Associate Professor, Harvard Medical School): Thanks for having me.
PALCA: And before we get started, I'll just remind everybody that I'm Joe Palca, and this is SCIENCE FRIDAY, from NPR.
Okay. So, Dr. Delbanco, what's the purpose of these notes? How do they differ from what we think of as medical records? What are these notes?
Dr. DELBANCO: Well, a lot of people don't realize that after we see a patient or sometimes when we're seeing a patient, we write down our impressions. And they serve many purposes. One is, basically, to remind us what happened last time and who the patient is when we see him or her next, sometimes to communicate with other colleagues if they go to see a specialist. They justify the bills we send, to a degree. And they're reviewed by people who are worrying about the quality of care in the institution where we work. And they tell the patient's story. But the problem is that the patient usually hasn't been privy to that in the past, and that's what we're experimenting with.
PALCA: Well, Dr. Fazio, is this - I mean, is this also a routine part of your medical life?
Dr. FAZIO: Well, it is. The study that Dr. Delbanco is speaking about is something that I reluctantly participated in because I think, as a number of practitioners, I was worried about what might happen if open access was given to patients. And I decided to participate in it because I think it's worth studying. And I actually think it's a valuable thing, but I still have concerns about how it might all fall out.
PALCA: Well, okay. So give us a flavor of the kind of concern that you have.
Dr. FAZIO: Well, I think the first concern that I have - and I suspect shared by many who either are participating in this who might even think about whether it came to their practice someday - is simply the concerns related to time. You know, primary care practice in America right now is not an easy thing. And we spend a lot of time doing extraneous work and paperwork and behind-the-scenes work. And I think the fear is - and I'm not sure that this will be borne out -the fear is will this create less time to do the things that we need for our patients, because we'll be responding to concerns or things that people want explained in their notes or in their medical records.
Thus far, I have to say, in the trial, this hasn't been borne out for me at all, which was actually very surprising to me.
PALCA: So, well, maybe, Dr. Delbanco, were you expecting patients to be hounding their doctors for explanations, or are you - were you less expecting that?
Dr. DELBANCO: Well, we had a few clues, because there have been small experiments along these lines in this country and actually in Europe. And the sense is, generally, what Sara just said, that I'm surprised it hasn't brought me to a grinding halt. And the question is why. My suspicion is that for every patient who, for good or for bad reasons, takes more of the doctor's time as a result of this, there's going to be another patient who takes less of the doctor's time. The questions that he or she may have had leaving the office, the things on their mind are answered by Sara's note, or my notes. And that's my guess of why Sara's surprised by how little perturbation there is in her daily life.
PALCA: Okay. Well, we're going to have to take a pause, but we'll continue this discussion. We're talking with a new program about letting patients have easier access to the notes that doctors take after a visit that they pay to the hospital. My guests are Dr. Tom Delbanco. He's a professor of medicine at Harvard Medical School, and Dr. Sara Fazio. She's an associate professor of medicine at Harvard Medical School.
We'll be taking your calls - would you like to know? I mean, would you like to see what your doctor is saying about you and your medical records? Or would you prefer just to let the doctors take the calls and you'll do whatever they say, and that's fine with you?
Well, it's a new world we're facing. And the Internet provides all sorts of new communications tools, and it's going to be up for people to decide. So this is a program that will give you a taste of what that future is going to be like. So stick with us, and we'll take your calls, and we'll take this short break.
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PALCA: This is SCIENCE FRIDAY, from NPR.
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PALCA: From NPR, this is SCIENCE FRIDAY. I'm Joe Palca.
We're talking this hour about the Open Notes project, a project that gets patients easier access to the doctor's notes on their medical records. And my guests are Dr. Tom Delbanco. He's a professor of medicine at Harvard Medical School. He's also a researcher, teacher and practitioner at Beth Israel Deaconess Medical Center in Boston. And Sara Fazio is an associate professor of medicine at Harvard Medical School. She's a practitioner of general medicine at Beth Israel Deaconess Medical Center in Boston.
So, Dr. Delbanco, you were saying there's an interesting story on how you got into this project.
Dr. DELBANCO: Well, about 30 years ago, I was seeing a patient about whom I was pretty worried. He was having trouble with his kids, losing his temper. He was having trouble at work. Sex wasn't working so well. He was fighting with his wife. And he told me he drank a couple of beers. And I was sitting there wondering whether he was in trouble with alcohol or not. And he was a printer by trade. And as I was writing down my notes, and beginning to take notes about our conversation, which we did in those days, I realized that he could read everything I was writing because he was a printer. And I said, can you read what I'm writing? He said, absolutely.
And I said, well, I'm - I have a dilemma. I'm trying to decide whether I should write down alcohol abuse. And if you don't think that's a problem, there's no point in my writing it down. But if you think there is, let me write it down. And he kind of - was quiet for a minute and said you better write it down. And he got a lot better after that. We really addressed it. He stopped drinking, and he had a very different life.
And a light kind of went off in my head and said this is shared decision-making. This is - he and I decided on something. And the record that I'm writing is the hub of that wheel, and that really got me started, actually, 30 years ago on this.
PALCA: Mm-hmm. And Dr. Fazio, when you hear that, does that strike you as, you know, the upside of this process, or is that something that also gives you concern that a patient would see something in his record that maybe he didn't expect to see?
Dr. FAZIO: Yeah. I think it depends a lot on the patient, and you certainly can have those instances that Tom describes, where it's a positive thing. But you could also imagine the opposite effect, where you had a discussion with a patient about their alcohol use. It didn't - it wasn't an easy discussion. The patient maybe is not quite at the point yet where they see that as a problem, but you know it is and you know their medical and physiologic implications of that problem. You write it in the note, and they might come back and say, how could you have written this about me? I'm not an alcoholic.
And I - you know, I think that what we write down, in fact, is often open to interpretation on both sides. And I don't mean that either side is right or either site is wrong, but that potentially could be a complicating factor in terms of just creating a misunderstanding or creating tension in a doctor-patient relationship. What you really want to have there is trust.
PALCA: Yeah. Well, okay. Let's see what some of our callers think about this. First, let's go to Catherine(ph) in Sunnyvale, California. Catherine, you're on the air with SCIENCE FRIDAY.
CATHERINE (Caller): Thank you. I definitely like to have access to my records. And some of my doctors allow that, and some don't. One, in particular, a psychiatrist who will show me medical information but not session notes, and I'm wondering about that. And secondly, with regard to what your guest just said, if there - if you can't show your notes to a patient, then why would the patient have trust?
PALCA: Hmm. Two interesting points. Well, first of all, let me go to Dr. Delbanco and maybe you can explain about the psychiatry part of this.
Dr. DELBANCO: Yeah, it's interesting. One of the first issues that comes up is what about mental health notes. And actually, by federal law, a psychiatrist can withhold his or her notes from a patient if he thinks it would harm them. When I talked to psychiatrists about this project, they thought, in general, that was a fine idea. And I'll tell you an interesting story, very quickly.
Right after an article was written about this, I got a call from a psychotherapist who said, let me tell you. I write my notes. And one day, for some reason, I was reading them out loud and the patient arrived without my seeing it and said, hey, that's interesting, keep on reading, please. And I did that, and since that time, I have read all my notes from the last visit to all my patients.
Dr. DELBANCO: I said, terrific. Can I quote you? She said, no. My colleagues will think I'm nuts.
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Dr. DELBANCO: So it's complicated, but my own view of the world is that if it's a mental health issue or a physical issue, you're the person involved. It's your head and your body, and you should know about what I'm thinking, and we should work it out together.
PALCA: But what about - let me go to Dr. Fazio and say, Catherine's other point about this: Trust. It sounds like, you know, one patient's trust is another patient's TMI, too much information.
Dr. FAZIO: Right.
PALCA: I guess you have to do it individually.
Dr. FAZIO: Right. You know, I think that's probably true, and you know your patients, to a certain extent. I think Catherine's point is actually a very valid one. And I it's part of the reason that I'm participating in this project, because I do feel comfortable with comfortable sharing this information. I think that there are some patients where you might have those reservations, and there might be some friction. But in all likelihood, most of those discussions have happened, or hopefully, they've happened in the room. But I can't imagine there being an extreme, where it might not be as smooth as Tom's example described.
PALCA: And it sounds to me, Catherine, that one of the things you might consider is finding a doctor who thinks more along the line as you do, because there might be someone who's more comfortable with sharing notes and establishing that kind of a relationship. I know that's easy to say and sometimes harder to accomplish, but that's a possibility.
Dr. DELBANCO: Catherine, you picked up one of the central questions: trust. And we're - in this study, we're asking both patients and doctors beforehand what they expect to have happened. And then Sara will be completing data and we'll be studying her a year later, saying this is what actually happened. And one of our central questions is what will have happened to trust? Will you trust, on average, your doctor more after you read the note, or less?
PALCA: All right, Catherine, thanks. You kicked off a good discussion.
CATHERINE: Thank you. May I ask one more question, quickly? Where will this be published?
PALCA: All right. That's a fine question.
Dr. DELBANCO: When you ask a researcher that, they always say, I don't know, and I hope it'll be on a terrific journal. But we published our most recent paper in the Annals of Internal Medicine, and you can find that on their website.
CATHERINE: Thank you.
PALCA: So that will give you a hint. All right. Catherine, thank you so much for the call. Let's take another call now from Jill in Kansas City, Missouri. Let's thank you. Jill, you're on the air.
JILL (Caller): Yes. Thank you for taking my call, Joe. In Missouri, we are allowed to have access to our records, and I had asked I had called my surgeon recently to start that process, and I haven't had much luck yet. I had a hip replacement four years ago, and the prosthesis they used was too big. Consequently, I've got one leg longer from the other, and it's caused all sorts of problems. So now the other hip is going, and I - realizing that, I had asked my doctor what size prosthetics he had used. And he shuffled through his notes and said, I don't seem to have that information here.
Obviously, I'm going to need that information. Do you think I'm going to have more success asking him to send his records to another surgeon? Obviously, I wouldn't have my first one again or to me? I have to pay quite a lot of money for these records, too.
PALCA: Yeah. All right. Well, Dr. Delbanco, what...
Dr. DELBANCO: Well, that's a generic story. And it's amazing how many people have talked to us since we began this about how hard a time they're having getting their records, as you exemplify. You can do it in a sneaky way, which really what you're implying, by getting it from the next person, or you can do it directly and say to surgeon, you know, this is my hip and it's my leg. And I would like you to send this to me, please, and don't let me make it difficult for you. This gets to the litigious society, doesn't it, and the whole question of lawyers and malpractice and things like. And one of the questions that we're asking and one of the questions we raise is whether this kind of transparency or openness will actually work in favor of trust and less litigation and less hiding and less secrecy, or will it go the other way.
PALCA: Jill, thanks very much for that question.
JILL: Thanks for your thoughts(ph).
PALCA: Let me ask you this. We've just been talking I mean, I'm suspecting that the people who've been calling have had some resources at their disposal to take these kinds of steps. Is this going to be another example of medical care for the rich who can afford Internet access, and - or is there some other way that this is going to be more universally available?
Dr. DELBANCO: Well, one of the most exciting parts of our study, from my point of view, is that we're working not only with Beth Israel Deaconess and the Geisinger Health Center in rural Pennsylvania, which serves actually many rich and many non-rich, but we're also working with Harborview Medical Center in Seattle, Washington, which is the county hospital of Seattle and caters primarily to those who are economically disadvantaged. And, in fact, 50 percent of the patients in the project there do not own computers. They will be going to the magnificent library in the middle of Seattle or to branch libraries, or they're setting up rooms at the hospitals where they can use computers. Everyone in Seattle seems to know how to use a computer, that's for sure, for kind of obvious reasons.
But one of the things we'll study is how is it different for those who are wealthy and those who aren't? We're getting data on that. We'll have, you know, many, many thousands of patients, so we'll be able to look at a lot of groups in-depth. And my own guess is that this will not be a yuppie thing. It's the last thing I would want to do, I must tell you. It's not my roots. And I think this will be of at least as much importance to those who are not so privileged as to those who walk around with a lot of money in their pockets.
PALCA: Okay. Let's try one more call and go to Linda in Rochester, New York. Linda, welcome to SCIENCE FRIDAY.
LINDA (Caller): Hi, thanks. I think this is a great subject. I've actually been doing this myself for several years now. In fact, when I go to choose a doctor, I won't pick a doctor unless they allow me access to that information. I mean, I can give you three quick examples why it's really important. First of all, I have caught mistakes in the medical records. And if you do not get those mistakes corrected, they go from doctor to doctor, and you could be treated improperly based on those errors. So it could literally affect the treatment that you get when you go to a hospital or a doctor, if all the records aren't correct.
Second of all, I had to apply for Social Security disability, and the government wants that information when you're applying for these crucial benefits for you to have. You kind of have to get that information.
And thirdly, I'll give you an example. Just this week - my dad is a veteran, and he wanted to get a prescription for a medication. And the doctor had tried all these other medications, which didn't work. And the only way now he can get approved for that current medication he needs to take is if he provides the VA with these office notes to prove that that medication will be effective in his case. So, right there, there's three reasons why this is so important for people to be able to have access to this. And I think it's a great thing you're doing.
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PALCA: All right. Well, there's definitely one vote for, I think we can call that.
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PALCA: Thanks very much, Linda.
Let me ask you, Dr. Fazio, you know, you were talking earlier about the potential for misunderstanding and the need for clarification. Do you think that it would be possible to create a glossary of terms or a look-up library or something like that that would make it easier for patients to sort of grapple with this information if it was - you know, if it became available to them more easily?
Dr. FAZIO: I do. And I actually think that that would be a step in the right direction. I mean, I really am an advocate for patients having access to their information. And I think it's - the way that we're going in the future, and particularly with the age of the Internet, really is in that direction, and it ought to be. But I think making sure that there aren't misunderstandings on the part of the patient or the doctor is a really important thing, and having the access to that sort of medical jargon and how do I interpret this word and what that means. Because a big part of the medical record for physicians and nurse practitioners is really communicating with other medical providers, and also, you know, for me and most of us, communicating with ourselves.
So, in three months, if I'm seeing a patient back, I want to remember everything I was thinking that day. And so I might put something on the differential diagnosis that is really very scary, but that I truly think there's less than a .5 percent likelihood of - say, a cancer. And perhaps I didn't say that because it was so remote, but I want to remember my thinking.
So I think there's that component that gets a little bit tricky. And it's not being paternalistic. And I have to say, 99 out of 100 times, I probably have had that conversation with a patient, but there are few patients with whom you wouldn't necessarily want to, because you've had such a long relationship with them that you know that that might actually be more damaging than the reverse.
But I think, to answer your question, having a glossary of terms, having a way that you can communicate and help the patient understand their record is really the right thing to do.
PALCA: Okay. We're talking about a new project to give patients easier access to the notes doctors take on them.
I'm Joe Palca, and this is SCIENCE FRIDAY, from NPR.
So, Dr. Delbanco - patients' access. What about insurance companies? How - I mean, I presume they can see this material pretty much ad lib, or no? And have they had any reaction to this project?
Dr. DELBANCO: We haven't heard from them.
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Dr. DELBANCO: And you're asking a tough question. And there are a lot of us here feel they have no business looking at the personal lives of the people they insure. On the other hand, they can come back with all kinds of arguments about why should we pay the bills if we don't know what's going on? And it's not something we're moving into quickly. I - my own view of the - all the people who look at the notes, they should be way down on the list.
Let me just say where I think this might go, following up on Sara's point about electronics and the Internet and the future. As far as translating words, there will be a day soon where you can put a cursor on a word you don't understand and it will pop up right there with a translation. There are already programs written like that.
My own fantasy about where this is going is that the notes will be jointly generated, that patients, in the long run, will - even in the short run, will write part of them, will put in their own input, will take histories on computers that detail what's on their minds, say what's on their minds, enter them into a record. The doctor will put what he or she thinks. And, in a sense, they'll agree on what's in there, and then jointly sign that as, really, a contract between the two of them to say this is what we're doing. The doctor will do this in the next year, the patient will do that.
It's not just fantasy. It's really what we call shared decision making. The doctor has a body of knowledge that's unique unto him or her. The patient knows more about himself than anyone else - or herself. And our job is to get the two stories together and make it work for that patient. And that's where I think this is going, and I think the hub of the wheel is the record, what we write, what we think, what everyone writes and thinks, and we need to get that all together.
PALCA: Well, Dr. Fazio, just before we leave, and we only have a few seconds, I want to ask you: Does a future like that appeal to you, or scare you?
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Dr. FAZIO: I think a little bit of both. I think, in general, it appeals to me. And I thought - I think that, you know, the concern among some physicians is the notion of time and having so little of it and just wanting to protect that so that we can do the job that we're here to do, which is really to take care of the patients and protect the time. I think that's the heartbeat.
PALCA: All right. Well, I'm afraid we're going to have to leave it there, but I can tell from the phones this is a conversation that everybody would like to take part in, so maybe we can figure out another way to continue this.
Anyway, Dr. Delbanco, thank you very much.
Dr. DELBANCO: My pleasure.
PALCA: He's a - Dr. Delbanco is a professor of medicine at Harvard Medical School. He's also a researcher, teacher and practitioner at Beth Israel Deaconess Medical Center in Boston.
And Dr. Fazio, thank you.
Dr. FAZIO: Thank you very much.
PALCA: She's an associate professor of medicine at Harvard Medical School, and she's also a practitioner of general internal medicine at Beth Israel Deaconess Medical Center in Boston.
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