Kevin Leonard - eHealth 2005 - Personal Health Record for Citizens

Do you have the clicker? Thank you. He's obviously heard my talk. I'd like to thank Alex Haddad and the organizing committee for inviting me up sort of last minute, and I'm very happy to be a last-minute replacement. And I'm going to talk a little bit about what it's like to be a patient and some of the research that we've done at the University of Toronto and University Health Network around patients and what patients are looking for in their record. The only bad thing is sort of coming and giving a talk right after lunch, and Ken was lucky enough to go right after. Now the food is sort of kicking in, and it sort of reminds me of a statement I got from one of my students just at the end of the semester at the early part of April. I'm going to go to the cafeteria. And he came up to me and said, you know, Dr. Leonard, if I had an hour to live, I'd like to live it in your class. And I said, wow, what a compliment is that? Was it my wit, my knowledge of the subject area, my charm? He said, oh, no, no, nothing like that. An hour in your class goes on forever. So hopefully that's not the case here, but we try and make it a little light. I've also written a book, and I'm going to read a couple of little brief sections from the book. They're meant to be entertaining and light, so I hope we enjoy that, and then we'll bring Ken up and get through some questions. A big part of where we are today in healthcare and e-health is around change management. We hear it mentioned all the time. It's the technologies available, but we have to not only look at the system that we have in place today, But also, how can we do things better? How can we work smarter rather than working harder? We're caught up in a world where if we're missing a deadline or we're late, we're trained to work a little bit harder, to stay later, to go that extra mile, to work over the weekends. And it's difficult to get off that treadmill and step back and say, okay, how can we do things better? Especially when there's pressure. And often when you stay a couple extra hours, you get rewarded because you meet the deadline. You get the praise from your fellow workers, thanks for hanging in there. And so that trains us to work harder the next time rather than working smarter. And one thing I've learned is that when we go through any type of transition and going into some form of new technology, whether it's information technology, diagnostic imaging, whatever that is, we have a tremendous opportunity to re-engineer the process at the same time that we are adopting the technology. So rather than trying to find technology that fits our process today and makes it faster, which is very difficult to do, We should be looking towards new technology that allows us to re-engineer the process to get off that treadmill, to work smarter, and to somehow streamline the whole process, which is what we do today, as well as incorporating the new technology. And there's no better way to illustrate that than to look at what we had in our personal health records or electronic health records, what we have in paper, and moving to e-records. And just transcribing or just copying what we have in paper onto Electronic records is not going to make any sense. Now, you may have seen these before. They're out in the public domain. I'm going to go through them fairly fast. But here's a list of them now that are some comments that we've had in paper files that, you know, it's not going to make any sense if we add them and just translate them over into the electronic world. Patient has had chest pains if she lies on her left side for over a year. I'm sure we all have chest pains if we lie. On the second day, the knee was better. On the third day, it had completely disappeared. She has had no shaking chills, but her husband said that she was very hot in bed last night. The patient has been depressed ever since she began seeing me in 1983. The patient was released without dressing. I just hate when that happens. The patient is tearful and crying constantly. She also appears to be depressed. Discharge status: alive but without permission. The patient refused an autopsy. I know I have to repeatedly do that when I go in to see my doc. Occasional, constant, infrequent headaches. And here again, I'm just quickly going through these because you may have seen these before and I don't want it to take up too much time. Healthy appearing decrepit 69-year-old male, mentally alert but forgetful. She is numb from the toes down. Since she cannot get pregnant with her husband, I thought you'd like to work her up. That always gets the best laugh. The patient has no history of suicide, or at least successful. Patient has left his white blood cells at another hospital. It's terrible when we do that. Patient's medical history has been remarkably insignificant with only a 45-pound weight gain in the last 3 days. She slipped on the ice and apparently her legs went in separate directions in early November. The patient had waffles for breakfast and anorexia for lunch. Between you and me, we ought to be able to get this lady pregnant. Okay, so I know you're awake. Part of the reason I wrote this book is— a big part of it is I believe that the patients really want to help improve the healthcare system Certainly those that I talk to across this great country of ours. We are very proud of our healthcare system. I personally, and I'm gonna explain that in some detail in a moment, but I'm standing here today, hopefully productive, contributing member of our society, certainly in the healthcare world, because of our healthcare system. I am a result of your great work. All we want to do is, as patients, is get involved. We want to help you help us. Without patients, we're all out of a job. Without patients, there is no healthcare system. We want to help. And I believe, as is mentioned in the slide here, that we can be a great help. 70% of the cost of the healthcare system, or thereabouts, and the numbers are A little bit different in different areas and in different countries, but more or less they're the same. 70% relate to the chronically ill, yet the chronically ill represent only 15% of the population. If you look at the cost of our healthcare system and we do a little bit of math— and I'm a statistician first of all, so sort of comes by, come by it naturally— but if we think about $125 billion, $130 billion to run our healthcare system in this country, and we think about half of the time patients want want care, and the other half, they want information. And if we look at a very small percentage of that information being translated in some way other than on a one-to-one basis— that's not to say that patients still won't come for care, because they will, and we still need information one-to-one that's a follow-up of our surgery or treatment or diagnostic imaging or whatever it is— but there's a certain amount of routine information that can be translated and communicated in ways much more efficiently than having patients go all the way down to the hospital and get in the exact same lineup as someone else that wants and needs care. And if we can streamline that a little bit, our guess is that we'll save about $3 billion a year in the healthcare system just by doing that. And if you talk to the chronically ill, this 15% of which I am a part, we want to do that. We don't want to always have to go down to the hospital and get that information one-to-one. We want other people to have access to healthcare too. And I think that's a big part of it. I came across this quote just as the book was about to be published, and so I included it. You must be the change you wish to see in the world, Mahatma Gandhi. And I've been out there trying to promote how important it is that we— Although as patients, we're concerned about privacy and security and so on, and I'm gonna get into some of the the research results in a moment, but we have to be willing to take some risks, just like we are in the banking world and other areas where we know that we don't have 100% security around our banking, but we still use banks, we still use credit cards, we still have ATM access. So I decided to write a chapter in the book about my own healthcare, and I figured that if I'm gonna ask people to risk having their healthcare file or their file exposed, Then I might as well be forthcoming and give every bit of information that I have. And you can see from this dialogue that I have done that. Way back in 1969, I was 12 years old and I weighed about 100 pounds. I was one of the bigger kids in the class, played football, was the quarterback, played shortstop in baseball, center in hockey. And by the time I turned 14, I was exactly the same, exact same size. I hadn't grown an inch. And it was now 66 pounds. And when we went to see a number of physicians, one diagnosis that sort of came up was that I was suffering from this middle child syndrome, which I didn't really know what it was, but later found out it was somebody who was suffering from attention. And that was the one thing I didn't suffer from, I can guarantee you that. So anyway, so here's a little bit of dialogue between me and a physician back in 1969. And you can reflect now as I'm going through it whether there's been much change in the last 36 years. During this middle child syndrome diagnosis process, I remember being interviewed by one doctor who was particularly anal. He asked, wondering if he could see a trend in me faking my illness to get my attention, if I had suffered from any other diseases. I told him that other than asthma, I had never had any previous illnesses. His reply was monotonic. That's a good sign. Do you wear glasses? I replied that I need them just for reading. Any hearing problems? What? I replied jokingly. What? Any hearing? Haha, very funny. Okay, next. How about your bowels? Do you move them regularly? This gave me great cause for concern. What did he mean by regularly? This, I can assure you, was not a question or even a thought that I had shared with any of my friends or parents. Therefore, how could I perform a comparison? How could I establish a benchmark to which I could compare and establish what is meant by regularly? I responded with the only reasonable answer, yes. Are they soft or hard? What is he talking about? What are you talking about? He responded with a quizzical look, your stool, are they soft or hard? How could I possibly know the answer to this question? It felt like I was taking a biology exam and forgot to study for it. I had no idea it would be this hard, the questions, I mean. I don't know. Is this relevant? Your bowel activity gives us a good insight into your state of overall health. Now, are they soft or hard? Intimidated by the question and the process, I succumbed. I guess they're about average. Remember, I'm 12. On a scale from 1 to 5, he persisted. My God, he's even quantitative about it. He wants me to rate it, assign a number to it like we do with movies. I was about to object, but I— when I quickly realized that he was evaluating not only my answers, but the way in which I answered. After all, there were no bounds with this middle child syndrome. I don't know, a 3, I guess. Whenever in doubt, always pick the middle. Are they light or dark? Dark, actually, almost black-like, I said with astute accuracy. Black? Black like the phone? No, but they're shaped like the phone. Now, this is crazy talk. I never realized one could have a 20-minute educated conversation about shit. But who am I? Seeing that I was puzzled and confused, the doctor turned his questions to other bodily functions. Please bear with me. How about your bladder? Do you have any problems urinating? No, not at all. That was an easy one. Do you sleep through the night or you have to get up to pee? I sleep through the night. I was starting to regain my confidence. Do you stop after you started? Do you have a steady stream? It was at this precise moment that I probably confirmed his diagnosis that I was suffering from some sort of mental problem. I said, I don't believe this conversation. You must have— you went to medical school for what must seem like an eternity, and all you can ask me is if I can go caca or pee-pee. Doesn't it seem like somewhere down the line you lost sight of your priorities? Well, to their credit, my mother and my father relied on what they knew rather than what they heard from the professionals. They continued to seek help and guidance from their network of friends and contacts. Unfortunately, for 2 years we sought a proper diagnosis and to no avail. During the summer of '71, my health deteriorated to the point that one hot July night I was rushed to the emergency, the last recourse when all else fails. I was operated on the next morning, and during the surgery I was diagnosed with Crohn's disease, an inflammatory bowel disease. I had over 3 feet of bowel resected during the surgery, and due to the progressed state of the disease, the recovery process was elongated. In fact, I spent a full 7 days in intensive care room before I was able enough to be transferred to a regular ward. All right. Now, part of this book is talking about my healthcare record, but another part of it is how— and trying to show how other industries have looked at changing technology and consumerism and how the 3 of— those 2 factors have affected different industries. And in the textbook, I talk about time with— that I spent with Vancouver Canucks. I was then a coach to the coaches more than anything else. I was told by Wayne Cashman once that a computer never scored a goal, so it was kind of difficult to get change and adoption technology in that industry. I looked at education and also in the banking and in the credit world. So, all of that is included in the textbook. And throughout all of this, we have to look at how we can— in those examples, how we've changed the process first and how the consumer then cannot be seen so much as someone that is just a receiver of information, which I think a lot of us see the patient as today, but not only that, but as being a decision-maker and also an information generator or processor and an information producer. I think those things are critical, that it's not just one way. It's not just pushing that information out to the patients and hopefully they'll look at it, but also engaging the patient to be an information provider as well and to partake in the decision-making. And I know that where I am today is because I have sought out physicians that want to be partners. And when you have those forward-thinking physicians that want to embrace your utility function, your interests, then it makes their life a lot easier and it makes success so much closer down the road. Okay, decision makers— survival of a healthcare system requires patient involvement, as I mentioned. Decision makers need info to make good decisions. Therefore, if patients are going to become partners, they're going to need that type of access to information. And paper documents within a fragmented healthcare system really makes consistent access infeasible, and that's what Ken had alluded to. We need the EHR before we have a PHR, to quote him. We need data and information in electronic format before we can get into electronic health records, before patients can access their own health record. And that is what is critical. And that's why I moved from a business school to University of Toronto in the Faculty of Medicine, not because I love technology and it's neat to play with. But technology is the only means by which the patients are going to access their record and the only means by which they're going to become decision-makers and partners in managing our care. So we need a coordinated voice. Even if government, if physicians, if hospitals, no matter who the other stakeholders are, wanted to turn to the patient group and say, okay, what do you guys think? We don't have a coordinated voice. We have representation from some areas of government, perhaps representation from some disease and illness groups, but there is no one group that represents all of the healthy as well as the ill. And it's not just the people that have illnesses, but the healthy, because we're all eventually consumers of healthcare, either ourselves or our family members. So it's critical that we have some sort of coordinated voice. And the author proceeds from the book All my proceeds will be going to help fund and create this national patient advocacy group that represents all of this, so that we can get patients and their input in towards what they want to see in the records, what kind of outcomes that we can see from patients getting access to the record, and just answer the question, where is the research? So very briefly, we've already done some where we contacted patients that were— that had a lung transplant, And we targeted specific groups because we knew they'd be younger, healthier, and more apt to using technology. And so we looked at, first of all, talking to physicians, and then phase 2, the post-lung transplant patient clinic, and talking to patients. So when we first talked to docs and trainees, less than 50% thought that it was a good thing to include the discharge summary in the electronic patient record. Less than 20% thought they should be including lab or OR notes. So they thought the idea was good but shouldn't include the discharge summary, or less than 20% including the lab or the OR notes. 60% of patients do not follow self-care post-discharge directives, however. So maybe that has something to do with how we're communicating that. Concerns over misinterpretation, patient demands for unnecessary tests and procedures were concerns. Community-based physicians, so when they went back and saw their family docs, Over 100% of them saw that not only was this necessary, but all documentation should be included. 100% access to any data must be included, personal information. And 60% of patients do not correctly follow post-care discharge, and EPR access will improve this. So it's odd that even though they have a different perspective in terms of what they think patients should have access to, here supporting 100%, their number of 60% was identical. Patients, when we talked to them, 66% wanted entire content online. 100% wanted supportive information for meds, and 90% wanted information on the course of illness and expectations. So not just their own illness and where they are, but what should we be expecting? What happens when someone else gets this? What happens when other people get this? What's the trajectory of the illness? What should we be expecting? 70% were computer literate, of these post-lung transplant patients. 60% access would be helpful for self-management and would improve their understanding. 60% thought both of them and their MDs would be the primary users of this access. 40% unlikely to see health improvement, which is a very interesting observation that only 40%— or 40% thought that it was unlikely to help their health status. They wanted to get that information, but it wasn't going to help or improve their health outcomes. 60% wanted supplemental paper copy. So even though it was electronic format, they want to be able to print it out and take it to either their friends or family members or perhaps to other clinicians, and 50% thought that their manual, in this particular case related to lung transplants, should be available online. Overall, and we've done lots of research since then, overall, patients are not as concerned as others think they are around confidentiality. It's not to say that they want their records splashed over the front page of the Globe and Mail, but— That's not what I meant. It's not a limiting concern to the point that we cannot move ahead. I think they're realistic about the confidentiality and the security issues in the world in which we live. They're sacrificing— right now, they're sacrificing care for privacy, and they're not as worried or as concerned about moving to e-records or even to sharing records. And where we see a lot of that is when we talk to parents about their children who need care. They may be hesitant about people accessing their own record, but they do not hesitate at all about emailing or sharing their children's record with somebody that may be in a different hospital, out of the country, or whatever, and the risk of security breaches because they want the best care for their kids. What we've got to do is have that mindset communicated across all of the population. Patients are concerned with wait lines and waiting times, just getting a doctor and getting the best treatment. And being able to access the healthcare system is a big concern as we move forward. The one person that will always have the greatest concern about their health and that of their family is the consumer. It's time to put the information necessary for the consumer to more effectively manage their healthcare in the hands of the consumer. Brian Baum, CEO, Health Record Network Foundation, Duke University School of Medicine. So I'm gonna end with one last quote, and this is how the book starts. And not only do I have Crohn's disease, but I also have allergies, allergies to food, fish, and nuts. And I was delivering a manuscript back in 1988. This is my doctoral thesis, in fact. And somebody was thawing fish in the kitchen. They came out, shook my hand. I wasn't aware of it, and that they were preparing fish. And somehow I must have rubbed my nose on the way out of the building. And so this is how the book starts. As I sat in the car and turned on the ignition, I knew I had only a couple of minutes before I passed out and stopped breathing altogether. My breaths became shorter, and none of my asthma medication was having any effect. I did not know the cause of this attack. However, I did know that I needed help immediately. I drove as fast as possible to the closest emergency room. I went through 3 stop signs and 2 red lights. A car was backing out of its driveway, which forced me onto someone's lawn to avoid waiting. Any additional minute could cost me my life. As I approached the hospital, I debated how to contact the emergency staff. Do I park the car and walk casually to the door? No time. Do I drive through the emergency room door, certain to get their attention? Too dramatic. Too St. Elsewhere-ish. I decided to lean on the horn. This proved very effective. A wheelchair was brought out of the emergency department door just as I pulled in, perhaps only 10 seconds after I initially hit the car horn. I managed to tell the doctor that I had allergies and asthma, and he pieced together the rest. I passed out almost immediately thereafter. On my mental passage To oblivion, I felt the medical staff pulling off all my clothes like there was no tomorrow. When I awoke almost 90 minutes later, the medical staff, after first convincing themselves that I was fine, started to reprimand me. First of all, I should be carrying a medical alert bracelet. If I had not been able to remain conscious to advise them of my condition, there was no limit to the possible causes for my condition and the cause for me to black out, hence treatment options would be risky. Second, I should be carrying an epinephrine kit that could be injected on the onset of the reaction. This would have avoided the whole incident altogether. I was then briefed on, on the cost to the healthcare system when someone acts irresponsibly. The physician kept me in the hospital overnight, and I was not allowed to leave in the morning until I filled out the forms for a medical alert tag. I resented being talked to as if I was a child incapable of managing my own affairs. However, he was absolutely correct. I took their help for granted, and that was to be a great lesson for me for the value of our healthcare system. You see, I was given a glimpse of the big picture, something that I had not yet been fortunate enough to see. While the doctors and the nurses worked on me to bring me back and save my life, I was taking their time, skills, and expertise away from some of the other patients who needed that level of care. This resulted in reduced quality of treatment for them and for me, certainly in overall healthcare system costs. My irresponsible behavior due to my ignorance, but irresponsible nonetheless, put other factors and other people at risk. I vowed that day that I would repay the healthcare system for my irresponsibility, no matter how long or how much it took. Thank you. Thank you, Joseph.