Dr. Klara Gershman uses a laptop computer to enter information about her patient in Miami Beach, Florida.

Dr. Klara Gershman uses a laptop computer to enter information about her patient in Miami Beach, Florida.

By law, most patients have the right to access their medical records. But obtaining them can be time-consuming and expensive. A growing number of health advocates are pushing to give patients easy electronic access to physicians’ notes. They argue this improves patient care by aiding communication and reducing misunderstandings. About a dozen medical systems, including the Mayo Clinic and Kaiser Permanente Northwest, allow patients easy access to these records. But some doctors worry this could cause greater confusion and harm. In the next hour, Diane and a panel of guests discuss the pros and cons of making physicians’ notes easily accessible to patients.

Guests

  • Dr. Michael McNamara chief medical information officer, Kaiser Permanente Northwest.
  • Lynn Quincy associate director of health reform policy, Consumer Reports.
  • Dr. Tom Delbanco professor of general medicine and primary care, Harvard Medical School.
  • Dr. Kevin Donovan director, Pellegrino Center for Clinical Bioethics at Georgetown University Medical Center.

Featured Clip

Watch as patients and doctors describe their experience with Open Notes, an initiative to give patients online access to visit notes from their doctors and nurses. The study included more than 100 doctors from across the U.S.

Transcript

  • 11:06:54

    MR. TOM GJELTENAnd thanks for joining us. I'm Tom Gjelten and I'm sitting in for Diane Rehm who we're happy to report is recovering from her cold. Most patients remember less than half of what their doctor tells them during an average appointment. A growing number of medical professionals now want to fix that by giving patients easy access to their doctor's notes.

  • 11:07:16

    MR. TOM GJELTENWith me in the studio to talk about the risks and benefits of making these records electronically accessible to patients, we have Dr. Tom Delbanco at Harvard Medical School, Lynn Quincy with Consumer Reports and Dr. Kevin Donovan at the Pellegrino Center for Clinical Bioethics at Georgetown University Medical Center. Good to see you all here. Thanks for coming in.

  • 11:07:38

    DR. TOM DELBANCOMy pleasure.

  • 11:07:39

    GJELTENAnd, of course, this is an issue that potentially, at least, concerns every one of us. I have no doubt you'll all want to be in on this conversation, listening to it or taking part in it. You can call us at 1-800-433-8850. You can email us, drshow@wamu.org. You can also reach us on our Facebook page or send us a tweet and our handle is @drshow. Tom, you are one of the creators of this initiative to make doctor's notes easily accessible.

  • 11:08:15

    GJELTENWhy is this important in your judgment?

  • 11:08:18

    DELBANCOYou know, one of the real challenges for people and for those who take care of them is how to have people engage actively in both managing their health and their illness. And it's been a conundrum we face in medicine from time and memorial and we're thinking very hard about how to help patients engage more actively and to do that, you've got to be fully informed.

  • 11:08:44

    DELBANCOAnd the doctor's notes, the notes that are written after you see the doctor or the nurse or the occupational therapist or whoever and have traditionally hidden from view, you're allowed legally to get them by virtue of HIPAA in 1996, but frankly, we've made it as difficult as humanly possible for you to do so.

  • 11:09:04

    GJELTENGenerally, who are those notes written for? Because I know a lot of patients see different doctors, who are in the hospital, for example, they see different doctors. Who are those -- are those notes normally written for the doctor himself or herself or for other clinicians?

  • 11:09:18

    DELBANCOWell, they have a lot of witnesses and one of the challenges we're posing is we want to add more of them now, now the patient and the family. But the doctor's written them to remind him or herself about the patient, to share them with other colleagues, if he needs a consultant, and then the quality of care measures look at them. The insurers look at them in order to figure out if they're billing properly. And lawyers sometimes have to look at them.

  • 11:09:47

    DELBANCOSpies sometimes look at them. And administrators look at them. An awful lot of people look at the notes and what we're suggesting is that we want to add now the patients and their family members and other people to see these things because we think they're very important. They tell the patient's story.

  • 11:10:03

    GJELTENAnd very briefly, tell us what your Open Notes initiative involves.

  • 11:10:08

    DELBANCOWe got 105 primary care doctors to volunteer to participate, along with 19,000 of their patients who were signed in on what we call electronic portals. There, they could get their laboratory tests, they can make appointments, they could send emails. But now, for the first time, they were also able -- they were invited to read their doctor's notes. The doctor would write a note, would sign it electronically and the patient would get an email notice saying, Tom has just signed your note. You're welcome to read it.

  • 11:10:38

    DELBANCOAnd we studied the impact of that.

  • 11:10:40

    GJELTENI should point out here, and then we'll drop it, that one of your major donors is the Robert Wood Johnson Foundation, which also provides funding for NPR. So our listeners should understand that. Lynn Quincy, Dr. Delbanco said at the beginning that one of the ideas, one of the goals here is to get patients to engage more in their own treatment, in their own medical care.

  • 11:11:08

    GJELTENDo you think that this is a step in that direction? First of all, I'm assuming that you agree with that goal and do you think that this would help in that direction?

  • 11:11:14

    MS. LYNN QUINCYI do agree with the goal. I think there's many reasons to get patients more engaged in their own care. It's very empowering for patients and there's quite a bit of evidence that shows that you get better health outcomes when that's the case. And the early evidence from trials of this Open Notes approach, this concept shows that it does engage patients more in their care so it seems very, very promising.

  • 11:11:39

    GJELTENAnd are patients using this, I mean, as Dr. Delbanco said, patients right now actually do have access to these records if they want to pursue them. Do you see evidence that patients are not sort of accessing these records to the extent they could, you know, and would making it easier make it more likely that patients really will take advantage of that?

  • 11:12:05

    QUINCYYeah. In the absence in an Open Notes type of approach -- so the older approach where you had a legal right to your record, but it was actually very difficult to get them, you might actually have to sue, it might be very expensive to get them copied, it was a giant rigmarole and so patients rarely took advantage of that right. And when they wanted to take advantage of the right, it was a very frustrating expensive process.

  • 11:12:28

    QUINCYThere was resistance on the part of physicians 'cause nobody really wanted that right exercises or at least that's what it seemed like. So the Open Notes concept is really completely different, where all parties have agreed in advance. You are going to have ready access to your notes via this electronic portal that Dr. Delbanco is describing.

  • 11:12:47

    GJELTENKevin Donovan, do you think that doctors will write notes, would write their notes differently knowing that they were writing them, potentially at least, for the patients to read?

  • 11:12:58

    DR. KEVIN DONOVANI do believe in a lot of case, they'll have to. People do joke about two things in medical communications. The first is doctor's handwriting and the other is the inscrutable jargon that doctor's like to use with other doctors. And I think there are two reasons why people resort to jargon. Not just physicians, but people in any profession or field and one reason is kind of trivial.

  • 11:13:27

    DR. KEVIN DONOVANIt's just like in junior high. We like to use words that people outside our group don't get. It makes us feel like the in crowd. And I remember in junior high we used some words that our parents didn't understand. If they caught us using words they did understand, we could get in trouble sometimes. But there's another reason for jargon, you know, and you'll see it on police shows as well.

  • 11:13:50

    DR. KEVIN DONOVANYou'll see it with medical shows when they are shouting out things in the ER. You can communicate a lot of information in a very concise way and a very quick way when you all understand the same jargon.

  • 11:14:05

    GJELTENIt's precision.

  • 11:14:06

    DONOVANIt is precision and it also is efficiency in terms of communication. But the doctors then will have the choice of either translating that routinely in their notes because they won't be able to use it when they put it in the notes, or they're going to have to translate it when the patients try and read the notes.

  • 11:14:28

    GJELTENWell, Dr. Delbanco, you're already doing this. And let me put the same question to you that I put to Dr. Donovan, which is do you see doctors who are participating in this system writing their notes differently than they would've otherwise?

  • 11:14:43

    DELBANCOYou know, we haven't studied it in the rigorous way yet, but the answer is basically yes. And I think they're changing them in a positive way. First of all, this jargon and it's jargon for you, it's also jargon for me. The number of abbreviations in medical notes now is fantastic and for me to understand and ophthalmologist note or a pediatric gastroenterologist note, I have to go to Google and look things up just as patients do.

  • 11:15:10

    DELBANCONow, we use SOB to me means shortness of breath. To you, Tom, it means something different and you may not want to read about SOB in the note about you and you may have make a double-take. But I don't like the jargon. I think the notes will change and they'll change in the right way. In fact, I think of Open Notes as a medicine, as something designed to help most people and every medicine we have has side effects.

  • 11:15:40

    DELBANCOIt's contraindicated in some people. It's absolutely contraindicated in other people. And medicine is also a therapy and I really think of it as a therapy, as a treatment, as part of the treatment and we're gonna have to learn to use that well as part of the treatment and you'll have to learn to look at it that way. So the notes will change and I think they'll change for the better. They'll be more teaching notes.

  • 11:16:02

    DELBANCODoctor means teacher and we'll be teaching patients and we need to teach patients. They come to us because they expect us to do that and I think they will change. I think they will change in the right direction. There's no reason why they shouldn't be directed more toward the patient and the family.

  • 11:16:19

    GJELTENSo the information in those notes has not been dumbed down for a broader audience in the notes that have been...

  • 11:16:26

    DELBANCOWe have no evidence of that. We've not had one doctor come up to us and say, you know, I'm really writing crumby notes now. It's not working. We have doctors smiling at us, even those who really didn't want to do it, and saying, I'm feeling closer to my patients. This is really working.

  • 11:16:41

    GJELTENLynn Quincy, you're associate director of health reform policy at Consumer Reports. Have you looked at this experience with Open Notes and come to conclusions of your own about what's working and what's not working?

  • 11:16:55

    QUINCYYes. We have been supporters of the movement and we've been watching the evidence as it rolls in, particularly your fine study, Dr. Delbanco, since you can see me pointing at him. And it's really very encouraging. I think all signs point to the fact that we should continue to make these notes accessible and study how people are reacting. But it's really quite overwhelming how the positive response that both patients and doctors are having.

  • 11:17:25

    QUINCYAnd patients report things like I understood the doctor's notes. It improved my recall of the visit to the doctor and it helped me explain to my family members what the doctor told me while I was seeing the doctor. So that's important stuff.

  • 11:17:39

    GJELTENKevin Donovan, to the extent that we've gone over this so far, do you question any of the claims that have been made here? I know that there are concerns and we're going get into those, but do you sort of accept everything that we've got out here so far?

  • 11:17:50

    DONOVANWell, as far as we know and I think that's one of the concerns that other people have out there. As Dr. Delbanco pointed out, we don’t know that people are communicating less clearly or less effectively, but we really haven't looked at that in a systematic way yet. I do know that physicians, god love them, are not always the clearest communicators even with other physicians, certainly with patients.

  • 11:18:18

    DONOVANIf you've ever read a medical article, you don't have to be convinced of that. The question is still out there and still unanswered, is this actually going to open up communication or is this going to cloud it?

  • 11:18:30

    GJELTENDr. Kevin Donovan is director of the Pellegrino Center for Clinical Bioethics at Georgetown University Medical Center here in Washington D.C. We're talking about whether doctors' notes should be more easily accessible to us patients. We're going to take a short break and when we come back, I want to get into some of the concerns that we, as patients, might have about this. Stay tuned.

  • 11:20:01

    GJELTENAnd welcome back. I'm Tom Gjelten. I'm your guest host today, sitting in today for Diane Rehm. And we're talking about a very interesting new initiative called Open Notes, under which doctors' notes about their patients will be more easily accessible, electronically accessible, to the patients about whom those notes are written. My guests are Dr. Tom Delbanco who's professor of general medicine and primary care at Harvard Medical School.

  • 11:20:29

    GJELTENAnd he is associated with this Open Notes initiative. Also, Lynn Quincy, associate director of health reform policy at Consumer Reports. And Dr. Kevin Donovan, director of the Pellegrino Center for Clinical Bioethics at Georgetown University Medical Center. So, Delbanco, so we already have some -- you have done some research. There are some data about the number of patients who have greater access to these notes and then what percentage of them are actually taking advantage of that. What can you share with us?

  • 11:21:02

    DELBANCOSo what we learned from 13,500 patients who made visits during the year, the first year of the study, is that 4 out of 5 of them read their notes. And the point I always make is that 1 out the 5 decided not to read their notes. This is freedom of choice, this is America. And what was so important to us clinically was that 70 percent felt more in charge of their care, felt better prepared for visits, as Lynn has said and remembered the material that they learned at the visit.

  • 11:21:34

    DELBANCOAnd most extraordinary to us is that 70 percent of them said they were taking their medicines better. That's a remarkable figure. One of the issues in medicine is adherence to medications. It's very hard to remember to take your medicines. And patients basically told us the note served as a monitor, as a reminder, as a master of them. Ninety-nine percent of the patients at the end of the year said the process should go on, whether or not they read the note.

  • 11:22:01

    DELBANCOAnd 20 to 40 percent, and this is really interesting for Kevin to comment on, said they shared their note with someone else -- their loved one, their partner, their lawyer, their nurse friend, their doctor friend, whoever. They could put it on Facebook. They could do whatever they wanted. Confidentiality is between the doctor or the nurse and the patient. Privacy is now up to the patient. And that's quite an extraordinary change in practice.

  • 11:22:25

    GJELTENOkay, you know, there is this phenomenon called hypochondriac where our patients sort of are convinced that they are dying and, you know, maybe hypochondriac patient seeing something that a doctor is speculating about as far as their condition. Couldn't that actually aggravate their condition? What do you think, Lynn?

  • 11:22:45

    QUINCYWell, this is what our -- all the panelists have touched on today. This is still to be studied. I think everybody involved in the movement believes there are probably certain patients for whom it's not appropriate for them to see the notes, you know, mental health conditions. And I think there's a lot of work right now to try to figure out what those cases are. You know, when is it going to harm the patient for them to see the note. But I think most people believe that it's a minority of patients that fall into that category.

  • 11:23:12

    GJELTENKevin Donovan, what would be some of the patients, in your judgment, who would not benefit here?

  • 11:23:17

    DONOVANWell, I think that it is reasonable to look at the question of are there reasonable withholds from sharing in a medical chart? And of course there are. I mean, when I would see a patient, I would write down what's called a differential diagnosis. I will list all the things that might possibly be, say, causing their abdominal pain. And that can range from everything to being psychosomatic problem to being an ulcer to being cancer.

  • 11:23:47

    DONOVANI don't think those are all equally likely. And I don't mean to imply that by writing them down. But it's an important part of the thinking process. It's almost like thinking out loud. There are some things I would never want to say to a patient early on when I really didn't think it was likely. You never want to use the cancer word, it's just very scary. There are other issues as well, as Dr. Delbanco was pointing out. These are shared by some people. And the patient that I have seen throughout my career were children and adolescents.

  • 11:24:19

    GJELTENSo, Dr. Delbanco, your point was that patients can make these decisions for themselves, whether they want to see these records or not. Now what about this issue of whether something should be withheld? Kevin use the word withholds.

  • 11:24:31

    DELBANCOSo we have many options that people are trying. Some of the practice is doing open notes. They can exclude a patient from the whole process no matter who they see. In other practices, they can hide a certain note. My approach to that is very simple. The patient should know about it. The patient should be privy. I have no trouble discussing with a patient of mine saying, you know, this will make you terribly anxious what I'm thinking.

  • 11:24:57

    DELBANCOAnd I think it may be in your best interest not to read it. On the other hand, when you read it you may be far less anxious than you are right now. If I can -- if a patient comes to me with belly pain and I think there's a 1 percent chance that it's a cancer, the patient may quite likely think it's 50/50. And when he or she reads that note that I write may be very relieved by seeing the way I'm thinking...

  • 11:25:22

    GJELTENBut you won't say...

  • 11:25:23

    DELBANCO...as I say, way down on my list.

  • 11:25:23

    GJELTENWill you write 1 percent in the margin?

  • 11:25:24

    DELBANCOI'll say way down on my list. And I think I will change the way I write as a result of knowing that I'm sharing this note explicitly, proactively on purpose with those whom I serve. Mental health is a very complicated issue. We wrote a piece in JAMA a month ago urging that mental health notes be opened. We were on the front page of the Washington Post here in Monday.

  • 11:25:45

    GJELTENI saw that.

  • 11:25:48

    DELBANCOSome of the psychiatric people I know think that I've lost it. Others think it's the best thing since sliced bread. But I don't see why if someone's mind hurts, it's so different from whether their back hurts. And I think, again, freedom of choice and open communication is really what we should be about.

  • 11:26:06

    GJELTENKevin Donovan?

  • 11:26:08

    DONOVANI am totally in favor of both in communication. It's always actually been my practice in my practice. Nevertheless, one of the things we do have to think about, because we mentioned children and adolescents, it's more than just mental health, there are things that we should put in the chart, things about substance abuse, things about sexual history. And if you're talking with an adolescent patient who may be alone in the room with you at the time and they walk out of the door with their Open Note, how are they going to withhold that from their parents?

  • 11:26:39

    GJELTENDo you have a comment on that?

  • 11:26:40

    DELBANCOYeah. Adolescents is a very special subject. And those practices doing -- sharing notes with pediatricians and Kevin and I were talking before and your four-year-old, six-year-old and eight-year-old kids are interested in hearing what's going on, it isn't just adolescents. But adolescents are special circumstance and they're carved out in most of the practices. And they, in some practices, get their own portal and their own access to which their parents or guardians are not privy.

  • 11:27:10

    DELBANCOIt's a special case, it's an important case, we have to learn about it. Abuse is another case. What about elder abuse, spouse abuse, sexual abuse, child abuse? We have to learn how to deal with that.

  • 11:27:22

    GJELTENOkay.

  • 11:27:22

    DELBANCOAnd there are difficult issues that we face, we know that.

  • 11:27:25

    GJELTENLots of special cases. Here's an interesting question. This came on our Facebook page. I'm going to put this to you, Lynn Quincy. I don't know who wrote this but it's a comment that was posted on our Facebook page. "Doctors notes can be damaging if not accurate. It can change whether or not your insurance covers your illness and determine whether you qualify for life insurance." That sounds like that would be a reasonable concern.

  • 11:27:53

    QUINCYWell, as Dr. Delbanco was saying earlier, insurers already have access to these notes, at least in some cases. So...

  • 11:28:02

    GJELTENDo they take advantage of that? Do they use that access?

  • 11:28:04

    QUINCYActually I don't know. I'm hoping maybe he'll comment on this when you go back to him, because I'm not sure how often they take advantage of that access. But there's a second question in that Facebook post which is what if there's an error in the notes.

  • 11:28:17

    GJELTENYes.

  • 11:28:18

    QUINCYAnd I think that -- and we have a lot of patients that we talk to regularly because they've had a sort of a consumer horror story, those people find us and we work with them. And there are cases where they either there was an error and it was corrected via the notes or they couldn't get access to the notes. And it was terribly frustrating for them because they suspected the error was in the notes. So I think that's an area where it can really help the patient and help with the medical outcome by having access to the notes.

  • 11:28:50

    GJELTENYou know, Tom, rather than put that question of what insurers would -- what use insurers make of these notes, I want to put that question to Michael McNamara, who is chief medical information officer at Kaiser Permanente Northwest. And as I understand it, Dr. McNamara, your medical institution is one of those involved in this open notes initiative. Thanks for joining us here on "The Diane Rehm Show," first of all.

  • 11:29:16

    DR. MICHAEL MCNAMARAThank you for having me.

  • 11:29:17

    GJELTENSo what about this issue that I was about to put to Dr. Delbanco but I'll put to you instead. You've heard our discussion, at least for the last few minutes, what use are insurers making of doctors notes now and do you see that that would be -- that would change at all if we were to move in a bigger way to this Open Notes initiative?

  • 11:29:41

    MCNAMARAWell, I'll have to be honest. You know, we have an integrated model where the health plan and the medical group are really working as an integrated entity. So we don't work that much with outside insurers. But what I do know is most of these decisions that are made about your insurance are based more on discreet data such as coded diagnoses, codes for the procedures that you have and probably not as much on the actual content of the note that is written by the physician or the clinician.

  • 11:30:09

    MCNAMARASo I wouldn't really expect that if they even took access to the notes it would necessarily change. Mostly they're basing their decisions on what we submit as codes. To the point that somebody made, if I have an inaccurate code, it's just as, you know, the same outcome as if I'd written something in the chart from the point of view of the insurer. And it is important that we make sure that the codes that we use to represent the disease that the patients have are as accurate as possible.

  • 11:30:35

    GJELTENNow, you know, the Affordable Care Act has changed the whole way we deal with preexisting conditions. But are there any -- would there be any issues for insurers here sort of finding out something about a possible preexisting condition as a result of having access to these notes?

  • 11:30:52

    MCNAMARAAgain, above and beyond them finding out that information based on the coded diagnoses, I would think not. Trying to sift through a lot of text-based notes to find information like that is a challenging endeavor. And that is why we use coded information to sort of describe what is the state of the patient and what are the things we've done to help them in their care. So I would not think so.

  • 11:31:16

    GJELTENWell, you heard or perhaps you missed it, but Dr. Delbanco at the beginning of the program laid out why his institution supports this move. Why don't you give us your view of why Kaiser Permanente Northwest has been so supportive of this Open Notes initiative, the idea of sharing doctors notes with their patients.

  • 11:31:34

    MCNAMARAWell, what's very interesting about this, I think what's unique about the Portland, Oregon community is this has now become a community initiative to the point that pretty much every major health care organization in our area, in a year, will probably -- this will be the standard of care that Tom and his group came out, introduced us to the Open Notes initiative just under a year ago.

  • 11:31:56

    MCNAMARAAnd I think we all saw the value of helping the patients know what's going on with their care than, you know, some of the, not only just the statistics that he tells you but I think some of the narratives from the patients are very compelling about how we think we can take better care of them. The way I look at it is, if a patient comes in and sees me a couple of times a year, that means I may, in aggregate, have spent an hour with that patient, maybe a little more.

  • 11:32:22

    MCNAMARAThe rest of the time, I'm trying to influence their day to day behaviors and hopefully they recall what it is I did during that hour of their life during the course of the year. We feel giving them a line of sight to what we're thinking and what our concerns are gives us the potential to even influence that behavior above and beyond the limited face to face time that we've got. I think the key for us really came in September when we met with the patients who I didn't ask them about it.

  • 11:32:50

    MCNAMARAThey had heard about Open Notes. They wanted me to come to talk to them about it. And when I brought the patient to our leadership of the organization, I think that was fundamentally the key change for us as an organization was understanding the value the patient saw in having access to the information.

  • 11:33:05

    GJELTENMichael McNamara is chief medical information officer at Kaiser Permanente Northwest. He's on the line with us from Portland, Oregon. I'm Tom Gjelten. This is "The Diane Rehm Show." And, first of all, Dr. McNamara, how many patients are in the Kaiser Permanente Northwest system?

  • 11:33:24

    MCNAMARASo we are just shy of a half a million patients.

  • 11:33:27

    GJELTENA half a million patients.

  • 11:33:29

    MCNAMARAHalf a million. Not all of them are currently enrolled for the online portal, but the vast majority are. And to the point that were made earlier, there are some patients who we are deliberately excluding for having access to these notes, specifically we are not yet into the space the mental health. We're waiting to see how that plays out as an organization. And we completely exclude teenagers from this as well.

  • 11:33:56

    GJELTENAnd do doctors have the right to participate in this or the right to opt out of the system if they don't want to participate?

  • 11:34:03

    MCNAMARAThey have the ability to choose to not share individual notes. But they do not have the option to not participate at all. And we do look at that and certainly, you know, a number of our physicians have chosen to do it. The vast majority of physicians have been very selective when they've chosen to hide a note and with a very, very low frequency. So I think all told, probably out of thousand physicians, about 300 have exercised that right on at least one note over the last seven or eight weeks.

  • 11:34:34

    GJELTENAnd what would be the circumstances that would compel them to do that?

  • 11:34:38

    MCNAMARAWell, I think you all had touched on some of these things. Some of it has to do with the sensitive nature of the topic. It could have been about an abuse issue or maybe an indiscretion on the part of the patient that they did not want someone in the family to hear about. Some of it have to do, and I think Kevin had touched on this, like, I'm still in the formative stages of trying to understand what I think you've got.

  • 11:35:01

    MCNAMARAAnd so, for example, one of our neurologist is talking about a patient where they're working through the possible diagnosis of a patient right now, but on that list is Lou Gehrig's disease, but they're not certain enough yet that they want that level of anxiety. So until they have a little more clarity around what to do with the patient, they'd chosen to hide that note. To Tom's point, you know, I'm not sure if that ultimately decreases your anxiety or not.

  • 11:35:27

    MCNAMARAI feel like in the absence of information, patients get to make up whatever they want. And I think people tend to think of some worst case scenario oftentimes, which makes them even more anxious. And I've always been amazed by the capacity of patients to deal with challenging information. But when they have knowledge, it actually seems to be better than not having knowledge.

  • 11:35:48

    GJELTENOkay. Michael McNamara is chief medical information officer at Kaiser Permanente Northwest in Portland. He joins us by -- joined us by phone. Thanks very much, sir, for being with us.

  • 11:35:58

    MCNAMARASure thing. Thank you.

  • 11:36:00

    GJELTENBefore we go to a break, Dr. Delbanco, I wanted to -- we've heard a lot of instances here where certain patients are excluded from this or where doctors opt out. But let's talk about the exclusions. Patients right now have the legal right to access their medical records. Are we opening up a possible whole new era, a whole new area where patients could demand access to notes that their medical provider doesn't really want them to see?

  • 11:36:29

    DELBANCOYou know, this is all about communication, Tom. And we in the healing professions have to learn to communicate better with our patients. Patients have to learn to communicate more openly and frankly with us. It's about trust. We always hear about the patient not trusting the doctor and it's also the doctor trusting the patient. I think it will be in the best interest of some patients not to read a note, and I should communicate that with the patient.

  • 11:36:58

    DELBANCOI do know that they have the right to go get them, whether I felt like it or not. So that will foster a different level of communication in my view over time. We're seeing, in our hospital every month, as Mike has implied, a decreasing number of hidden notes. We have doctors colleagues who excluded in our initial trial certain patients. They were allowed to that. They came up more recently and said I should have never done it. I'm really talking frankly with these patients and it's working.

  • 11:37:27

    GJELTENDr. Tom Delbanco is professor of general medicine and primary care at Harvard Medical School. My other guests are Lynn Quincy from Consumer Reports and Kevin Donovan from the Pellegrino Center at Georgetown University Medical Center. Your calls are next. Stay with us. We'll take a short break.

  • 11:39:58

    GJELTENAnd welcome back. I'm Tom Gjelten. I'm sitting in for Diane Rehm today and we're talking about whether patients should have more access to the notes that doctors write about them and their conditions and their treatment. My guests are Dr. Tom Delbanco, professor of general medicine and primary care at Harvard Medical School and a practitioner of the so-called Open Notes initiative.

  • 11:40:21

    GJELTENAlso, Lynn Quincy, associate director of health reform policy at Consumer Reports and Kevin Donovan who's director of the Pellegrino Center for Clinical Bioethics at Georgetown University Medical Center here in Washington. You know, before the break, we were talking about the issue of whether insurance coverage in one way or another might be affected by wider access to doctor's notes.

  • 11:40:45

    GJELTENWe then received an email from Michael who is an insurance agent and he says he's been listening to this show while writing an email to a client. The topic of this email that he's writing is the issue of an incorrect note written on a medical chart that is preventing the client's underwriting. The doctor who wrote this note is no longer practicing and this issue may prevent the client from being offered a policy from his employer.

  • 11:41:14

    GJELTENThis agent says, "medical records are used in every life insurance policy I write." Do you have any thoughts about that, about that this agent is saying?

  • 11:41:28

    DELBANCOYou know, I think having another set of eyes on the record is incredibly important and having the patients being able to see what we write about them has enormous safety aspects. We're doing a big study now in our hospital, Beth Israel Deaconess in Boston, one of the Harvard hospitals where we're trying to develop a reporting mechanism for patients when they pick up mistakes and ways for them to change them.

  • 11:41:53

    DELBANCOWe make mistakes and they can be very important. They can be important clinically and they can be important, as Michael is implying, in terms of insurance and they need to be fixed and we need to figure out mechanisms to fix it and their eyes, the patients eyes, will make for a more honest, a more open, a more complete and a more accurate note over time.

  • 11:42:15

    GJELTENLynn Quincy, how does this work in practice? Will each patient have a portal that he or she can go to where they can read those notes or how actually would it work?

  • 11:42:24

    QUINCYThere's not a single way that Open Notes works, like it's not a single piece of software. But the general idea is that doctors are already using something called an electronic health record, which is where you're storing, in digital form, all sorts of information that used to be in the paper medical record. And when you have that medical record software, that electronic health record, there's typically an option included to open up a patient portal, where a patient comes in through a computer with a password and an ID and they can see information.

  • 11:42:58

    QUINCYNow, if they don't turn on the aspect of the software that allows you to see the doctor's notes, you wouldn't normally see that, even if you have a patient portal now. But in the Open Notes movement, typically that switch is flipped so that now you see this other piece of the medical record which is the notes. So you're on the computer and you're going through this portal. The data's all still stored somewhere in a server controlled by the doctor.

  • 11:43:23

    QUINCYIt is not, you know, being broadcast into the internet or anything like that.

  • 11:43:28

    GJELTENLet's go now to Robert who's on the line from Reston, Virginia. Hello, Robert. Thanks for calling.

  • 11:43:32

    ROBERTTom, good morning. As medical record reviewer myself, albeit from the legal end of the ledger, with the advent of electronic records, I've observed far more errors in the records than I had in the original handwritten records that I would see. And I attributed it to two matters I'd like to hear the panel comment on. One is, the electronic records frequently involved drop down menus with multiple choices for the physician or whoever is using it to pick from and they almost feel compelled to pick one of the options on the drop down menu.

  • 11:44:10

    ROBERTThe second feature is that it might not be the doctor who is entering the information into medical records at all, but a scribe, a new kind of institution in a number of hospitals an doctor's offices where the record entry person is a scribe. And I wondered if your panel would mind commenting on those two.

  • 11:44:29

    GJELTENWell, Tom Delbanco, I'm sure you're familiar with both these issues that Robert raises.

  • 11:44:35

    DELBANCOYou know, I was raised at a time in my medical school, the way I was graded, in part, was if the history I wrote was such that if a patient were walking down the hospital halls, that patient would be recognizable. My mandate was to tell the patient's story so it was living. Would integrate the shortness of breath and the depression and the knee that hurt. And we've gotten very bad at that.

  • 11:45:00

    DELBANCOAnd the material that you're eluding to, these drop down check the boxes, you know, you'll see a patient now that all the joints are normal and then you go into a long description of the swollen knee. It's really crazy. I deplore it. And quite frankly, one of my subtexts in trying to push this initiative is to get rid of that. And the scribe...

  • 11:45:21

    GJELTENBut let's stick with that issue for a second. How would going this electronic route make it more likely for doctors to sort of write this narrative that you're describing?

  • 11:45:30

    DELBANCOYou know what? You're going to call the doctor and say where the hell am I? I don't see me. Bring me back. Can I add to the record? One of the fascinating figures we had is that 60 percent of the patients wanted to be able to approve a note and a third of them said they'd like to contribute in the note. And frankly, our fantasy is that in time, patients will be jointly cogenerating those notes with us. They'll be signing them will us.

  • 11:45:57

    DELBANCOThey'll be agreeing to the plans with us. They'll take a course toward their health or their illness together with us and that will counteract some of these electrical phenomena that I think are pernicious.

  • 11:46:10

    GJELTENKevin Donovan, your thoughts on that and also address this issue of the greater use of scribes these days, which is kind of a new development.

  • 11:46:17

    DONOVANSure. And both of these are related to the use of electronic medical records, which I think Dr. Delbanco pointed out the problems, but they're here to stay. Unfortunately, the electronic -- or fortunately, the electronic medical record is being strongly pushed by the federal government. Doctors will have to be using one to get reimbursed and they have other problems, too, not just the drop down menus, but people cut and paste histories from previous notes without really going over them again.

  • 11:46:47

    DONOVANThis probably is the strongest argument for what Dr. Delbanco has been advocating, which is immediate sharing of these notes with patients because anything that increases communication and clarity then should be an improvement.

  • 11:47:03

    GJELTENWell, Dr. Delbanco, would these notes be written by the doctor himself or herself or might they be written by a scribe who is sort of basically taking dictation from the doctor?

  • 11:47:12

    DELBANCOWe're a fashionable country, right? We have fads and scribes are in this year and people are turning to people and there's a good argument. You know, I can spend more time face to face with a patient discussing what's really important and someone else is going to take the responsibility of recording this. It's an interesting notion. If you the facts aren't in about Open Notes, there are fewer facts about the impact of scribes and we're going to learn it.

  • 11:47:38

    DELBANCOBut they can make mistakes. We can all make mistakes. I heard a horrendous story two nights ago when I was visiting a hospital. A doctor there, a scribe, by mistake, entered about 20 diagnosis yes rather than no on the checkbox. And this doctor struggled with lawyers, with the electronic health record manufacturers for three months of agony to get that taken off a record. It was an extraordinary story and it's a frightening story.

  • 11:48:08

    DELBANCOBut the point is, she saw it. She was able to do something about it as a patient and she could get it fixed. You can't get it fixed if you can't see your records.

  • 11:48:16

    GJELTENLet's go now to Neerja who's on the line from Dallas, Texas. Thanks for calling "The Diane Rehm Show," Neerja.

  • 11:48:22

    NEERJAOh, thank you for having me this morning. I appreciate it. I'm a medical professional here in Dallas and we use electronic medical records currently, but my question is related to the earlier question. We find that patients, even with access to their medical records are oftentimes even more confused and we spend countless hours talking to them on the phone with no, you know, monetary reimbursement and we just don't have the manpower or the time or the resources to take care of all of these problems with reimbursements going down lower, the amount of time it takes to fill out medical records.

  • 11:48:57

    NEERJAThese are issues that I think need to be addressed.

  • 11:49:01

    GJELTENMore confused because of the jargon they see in those notes, words they don't understand, concepts, names?

  • 11:49:05

    NEERJAWell, I think that they get more questions. And sometimes, when they leave the office, they have more questions and so we have nurses that answer the phone, the physicians are answering the phone. We get over 200 phone calls a day.

  • 11:49:20

    GJELTENWell, Dr. Delbanco or Kevin Donovan, I'll let both of you respond to this, but time is money in the medical profession and anywhere else and if this creates more demand, you say patients should be able to demand things of their medical providers. That will cost money.

  • 11:49:38

    DELBANCOYou know, we asked three questions when we did this experiment. One, would it help patients engage more actively, two, would it kill the doctors and three, at the end of a year, how would they both vote? And at the end of the year, the patients were berserk about it in a positive way. The doctors noticed very little and they all voted to go on. Not one doctor dropped out.

  • 11:50:02

    GJELTENKevin Donovan.

  • 11:50:02

    DONOVANWhat Neerja was describing is a real problem, but I think that the solution may be part of what we're talking about already. Open Notes is one aspect of patient portals. The meaningful use regulations that all doctors will have to jump on board with if they want to keep getting paid for their electronic medical records require patient portals. They don't have to be discussed at the moment in the room with the patient, but the patient will have to have some sort of access.

  • 11:50:31

    DONOVANThey will have access to their records by logging on themselves. They'll have more than that. They have access to pharmacy refills and lab results and a lot of other things. And I think that by controlling how that access takes place and who responds to it, some of the burden that doctors are seeing now may actually be lifted.

  • 11:50:50

    GJELTENWell, I actually -- my doctor uses a patient portal with me and I just went through a procedure with her where she referred me to another physician for an issue that I had. Previously, that would've actually required a visit and it was all done through a couple of emails exchanged on the patient portal. Lynn Quincy, you wanted to make a point.

  • 11:51:08

    QUINCYI did. I think it's obvious to a lot of listeners, but I don't think the solution is, to your caller's question, that we share less information with patients so that they generate fewer questions. I think the end point we all want is that patients walk away from their physician visit with a complete understanding of what transpired. And I just wanted to put that on the table.

  • 11:51:30

    GJELTENLet's go now to Cameron who's on the line from Birmingham, Alabama. Hello, Cameron, thanks for calling "The Diane Rehm Show."

  • 11:51:37

    CAMERONHi there. Dr. Delbanco, thank you so much for all the work you do on this and I think you'd be proud of UAB Kirkland Clinic that gives you a printout of your visit when you finish and you're asked to look over it, if you want to, and you're given additional time with your physician afterwards to ask any questions that generate from the printout they gave you.

  • 11:51:52

    GJELTENLet me interrupt you right there. Are you -- is this your own reform or are you part of some broader initiative here?

  • 11:51:59

    CAMERONUAB Kirkland Clinic. And I wanted to give a point, Tom, about how collecting patient errors is also now possible. I had, in 2008, a two to three year incredible muscle disease that nobody could figure out and had been repeatedly asked by doctors had I seen a rash. And I said no because rashes, to me, are red, rubby, whatever. Was able to look at my open record, look up the blood tests, see gluten, see a correlation on the NIH website between that and (word?) .

  • 11:52:25

    CAMERONLooked up a picture of a (word?) rash, saw uh-oh, I've been lying to my doctors, not knowingly, red knuckles to me doesn't look like a rash, but I was able to email a picture of my knuckles to my doctor, boom, I had a diagnosis after three years of incredible trauma trying to get that information. And I ended up having to correct myself. I had not known the word rash to be whatever I had and I was able to, through my open access to my records finally provide the piece of the puzzle that we needed to get me diagnosed.

  • 11:52:53

    CAMERONAnd now, I can walk and talk and breathe, which before, the mystery of not knowing was so much worse than being told I have a muscle and a threatening condition, but I can manage it. So this Open Records initiative is crucial to my well being.

  • 11:53:03

    GJELTENWell, great to -- thank you so much for sharing that story. That was Cameron from Birmingham, Alabama. I'm Tom Gjelten sitting in for Diane Rehm. So Dr. Delbanco, you were nodding your head as Cameron was going on and on there about how having access to her records helped her.

  • 11:53:24

    DELBANCOYou know, you made a lot of very interesting points. One of the implications of what you said is that not only will doctors be correcting things, or nurses or all the other people, I want to emphasize this isn't just doctors we're talking about. At our hospitals, occupational therapists, physical therapists, physician assistants, nurses, everyone writes a note. Not only will they be correcting things, but patients will also be correcting things.

  • 11:53:47

    DELBANCOYou're both coming to the table similarly and getting -- ending up with a shared record that is an accurate record and that's immeasurably important. You represent a growing number of people who figure out things by themselves through chat rooms, through other patient groups or going to Google. We always underestimate how resourceful you, the patient, is. And this will level off this playing field in ways that I'm very excited about.

  • 11:54:12

    GJELTENKevin Donovan, I want to ask, my doctor is driven crazy by Web MD. She says that she spends now so much time trying to debunk her own patients' theories about what is wrong with them because they've spent so much time Googling their condition and coming up with bizarre diagnosis.

  • 11:54:30

    DONOVANIt is a problem that cuts both ways as we heard from our last caller. Sometimes patients actually realize what they should've been saying and were saying incorrectly. But at the same time, you do have to spend a lot of time correcting misinformation. The trouble with the internet is that the information isn't verified. I think we're talking about trying to find verifiable information.

  • 11:54:50

    GJELTENAnd let's go now Julie, who's on the line from Grand Rapids, Michigan. Hello, Julie. Thanks for calling "The Diane Rehm Show."

  • 11:54:58

    JULIEHi. I just wanted to say that, well, since I have a preexisting condition, really the only symptom is headaches and the way the system works now it is tempting and sometimes compelling to lie or withhold information from my doctor because I've learned the hard way that if you share, you know, a symptom, even a headache, which could be anything, that's going to prevent me from getting, you know, life insurance. It used to prevent health insurance.

  • 11:55:30

    JULIESo, you know, if you have an addiction or a symptom that may indicate that there's a condition that, you know, may still be symptomatic, there are reasons to not share that with the doctor. You don't go on record about anything.

  • 11:55:48

    GJELTENLet's put that question to Dr. Delbanco before we go. It seems to me that this would be a problem whether or not there are access to records or not.

  • 11:55:56

    DELBANCOI think that's right. I mean, one of the wonderful things about the Affordable Care Act, as Tom has implied already, is that the preexisting condition at least will not keep you from getting health insurance. Life insurance can be a different issue. One of the fears we have with Open Notes is that patients will withhold things from us. We can't take good care of people if they don't tell us what's going on and it really is a potential down side and we're quick to acknowledge that fact.

  • 11:56:25

    DELBANCOOn the other hand, free and open communication will trump that and will make it happen.

  • 11:56:32

    GJELTENReally quickly.

  • 11:56:33

    DONOVANAnd I think Dr. Delbanco's making a point. Communication has to cut both ways.

  • 11:56:37

    GJELTENWell, I'd like to thank you all for conducting this conversation in such a nuanced manner, sort of emphasizing the risks and the benefits alike of this new movement. Sometimes, you know, in talking about these issues, we get very polarized discussions. It's easy to find a lot of common ground here. I'd like to thank my guests, Tom Delbanco, professor of general medicine at Harvard Medical School, Lynn Quincy from Consumer Reports, Kevin Donovan from the Georgetown University Medical Center.

  • 11:57:06

    GJELTENEarlier we had on the line, Michael McNamara, chief medical information officer at Kaiser Permanente Northwest. I'd like to thank our listeners. This is Tom Gjelten, your guest host. Thanks for listening.

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