Rise Of The Patient Tribute: Kevin Leonard on Patient Involvement & Destiny
Rise Of The Patient. Tribute to Kevin Leonard
A Life of Redefining Patient Involvement & Patient Destiny
Last year I reached out to patient communities and leaders to share their stories and experience with the health care system on my talk radio show, Rise of The Patient. I had produced the show with the hope to facilitate involvement, collaboration and elevating key stories that needed to be shared and would help the cause. What I had not anticipated is how inspired I would be by engaging with these wonderful people. The late Kevin Leonard, without a doubt, was no exception. Kevin was an accomplished University Professor and Researcher. Kevin also had Crohn’s disease. Kevin was passionate about patient involvement in health care management. He felt patients should take charge of their destiny and partner with health care leaders to not only improve it for themselves but for others also. Since Kevin’s interview, I have searched for leaders in the health care space to partner on improving the patient experience. Needless to say, a key part of Kevin’s interview was realized during my journey. They are so many who talk patient centricity, so few walk it. From health care leaders, practitioners and even innovative developers who have zero interest on how patients use their creations. So much exclusion, where inclusion should be a given. I tip my hat to the few who do. For the others, I urge you to rethink the definition, rethink how would you want to be treated when the time comes when you are a patient. Bring Kevin’s dream alive, by being involved and leading the way. Here are my top 10 takeaways from Kevin’s interview:
- Patients are destined to manage their own care.
- Have better discussions when you see your doctor.
- We have technology, we have it everywhere. The only place you really don’t use it is in healthcare.
- The most critical communication in healthcare is that between patient and doctor.
- Need to think of Patients as Partners.
- Patients are not the end product.
- We are talking about patient centricity, we are not really doing it.
- Doctors don’t know what its like to be a patient.
- There should be a course that is called: Treating Patients, The Whole Person.
- Deep down we are all the same. All of us are out there experiencing the human condition ~if we think like that then we will help the patient in the next bed.
Wise words from a wise man. The audio to Kevin’s interview is below. Do take the time to listen. A copy of the transcript is also shared below.
May you rest in peace Kevin.
The Late Kevin Leonard Interview on Audio
Shirley Williams: Welcome Kevin, on to the show. I’m really thrilled that you can join me and have this discussion.
Kevin Leonard: Thank you.
Shirley Williams: Question 1: So Kevin we’ll be going through Patient Destiny and your philosophy on healthcare, would you mind sharing a little bit on your background for our listeners?
Rise Of The Patient Guest, Kevin Leonard’s Answer: I’ll be happy to. I come at the whole healthcare system from a couple of different angles to be honest and I realize that makes me somewhat unique and one of the things I try and do is not consider myself that unique a patient. I’m representative of many types of patients.
So first of all, I was diagnosed with Crohn’s disease way back in the early ‘70s. Most people have never heard of, I’ve never heard of Crohn’s disease before then and it was a quick learning experience because it was hard to diagnose. It took a couple of years and seeing many, many doctors and then finally I got rushed to emergency when I was 14 just turned 14. I was about 65 pounds or so and I wasn’t going to make it through that evening I don’t think without that surgery and then they found the illness upon surgery. So that’s number one. I’ve been a patient for well over 40 years.
Secondly, I’m an academic. I teach at University of Toronto. My area is statistics and I love statistics for a number of reasons. The main reason is you can apply it to any really different fields. I’ve done a lot of different things, but healthcare is one that’s always intrigued me in terms of not so much biostatistics clinical areas but more in terms of trends and managing the system. So I have a good knowledge of what it’s like to be a patient and how the system works from that perspective and also how does it work administratively.
So all of this together when I certainly go through episodes of illness and I think about how can I get a better healthcare experience, I like to think of improving the flow of information and I think that’s really the key. A patient is surrounded by a lot of support, internal support, medical support and so on and they have to share information and that information has to be timely, it has to be accurate and with new technologies today, we should be on the forefront of healthcare that we’ve never seen before. The problem is we haven’t adopted this technology well and that’s what drove me to make the patient more involved, how we change healthcare system for the better in the future.
Shirley Williams: So there’s a couple of things, I mean first of all, Kevin, you’re talking truly from a lot of experience if I may say so as a patient with our healthcare system so certainly a lot of credibility there with the pros and cons and with your own utilization. And so you’ve just touched a lot in that intro on the need for good information and the need for being able to use technology well. Prior to that what were the drivers to get you to that stage?
Shirley Williams Question 2 : Why have you focused on the we need better information and why do we really need to use the technology well, just from a patient point of view? I just wanted to understand that a little more.
Rise Of The Patient Guest, Kevin Leonard’s Answer: Yeah. It’s an excellent question and I think it’s a question many, many people don’t know the answer to and I’m not sure I have a definitive answer. But I do believe that somewhere in all of this, the patient plays a large role. Patients know when they’re better, they know when they’re getting better, they know when they’re getting sicker and they can tell that difference. So it’s not like you need to know that your iron count is low from a blood work you did yesterday to realize that you’re a little bit anemic or you’re not chewing well, you don’t have your energy. But there’s something about getting the actual values. There’s something about seeing the direction and the movement of your indicators that allows you to manage your healthcare consistently and that’s where patients have to get involved. That way I can flag changes to my doctor where he or she gets around to it.
Shirley Williams: What you’re saying here is in addition to those physiological indicators ie what your own internal indicators are telling you, having some visuals with data to marry the two so that you can better manage it would be a huge step forward.
Kevin Leonard: Yes. And I mean right now I’ve sort of got my own little Kevin Leonard healthcare system hooked up. It’s a number of different research projects and technology that we’re working on and researching at University of Toronto and this allows me to get early access. So hopefully this is coming for everybody but certainly, for me through this research, I can get access to my blood work, some of my blood work, some of my other results online shortly after the tests are taken.
So I know I can go for blood at 3:00, I can come home have dinner and then right after dinner, check and say okay how did I do on my results today. I know I’m doing well and so I check it very infrequently. But if I’m not doing well, I know I can check it very frequently and even minor changes can give you a heads up to something that could be three or four weeks down the road. It may take three or four weeks down the road for the indicators to show up but by then I could be in serious problem. I could be in the hospital. I could have developed a massive infection and then much, much harder, much harder to get well at the end. The fight to get well is a lot longer than the fall to get sick.
Shirley Williams: I certainly can totally understand that and appreciate that.
Shirley Williams Question 3: Kevin, let’s go into the what is Patient Destiny. I mean you have given us a wonderful overview on your perspective on why it’s important to at least have access to your own data. Touch a little bit on Patient Destiny.
Rise Of The Patient Guest, Kevin Leonard’s Answer: Okay. Well Patient Destiny. I tried to come up with something really catchy, something that grabs people’s attention. It was around that time 2005-2006 that something called “Revolution Health” started in the US. It’s been discontinued since [should have or could have}but that was a nice name for me, Revolution Health. How do I get something catchy like that?
Anyway, we came up with Patient Destiny because patients I believe are destined to manage their own care. Not only that, we manage our care most of the time now anyway. If you look at the time that I’m managing and my caregiver, principal caregiver being my wife, I mean we manage me 99.7% of the time. The rest of the time, I’d see a physician, nurse or something. But if you think about it your interaction with the healthcare system in fact is not very long unless you’re in a case of real severe difficulty then you’re in a hospital and it’s a different thing but you know, most people see a doctor once in a while, see a nurse but are not with a doctor 24 hours a day, 7 days a week, you’re just not. So you’re already managing your health.
So please give me some information, some indicators, some tools to help me do this management so that when things change I can alert you immediately. I don’t have to write a long story. You know, you access as a physician, for example, the same data that I access as your patient and we’re sharing that information. That way I can flag it, take a look at it, say okay now I get you, now I see. I mean most physicians are extremely busy. They have a large roster and who knows what kinds of other patients that are on the top of their mind that day as it should be. How do I get two minutes of attention? It’s almost impossible. Unless you flag it, unless you say here’s something that’s come up, what should I do now?
And we’ve had unfortunately but over the last seven or eight years many, many cases where we’ve reached out to the healthcare system and had them come and intervene in some way but certainly helped me in terms of short term direction. You know, get to the ER, go for blood work, get a chest x-ray. I mean I’ve developed unfortunately pneumonia a number of times recently but the first time it happened I wasn’t sure what was going on. I was able to contact my physician. He sent me for a chest x-ray. All within a couple of hours, we’re diagnosed as pneumonia and he put me on the right prescription. That wouldn’t have happened in a previous type of generation where I would play telephone tag for at least a week.
Shirley Williams: Right, right. So this is taking the case of not only being more involved with your healthcare with regards to asking questions but also being more involved in monitoring the indicators, your data and with this continuous monitoring, you manage your health so that you can be proactive, or less reactive, if an incident should surface?
Kevin Leonard: You know, I think that’s actually a keyword proactive. We want patients involved. You’re responsible, you have to be involved. And I think that’s the message and sometimes patients are surprised but you know, what’s the message of Patient Destiny, they say " You’re going to look after me." Actually, our first line is usually "No. You have got to get more involved." It’s not about you stepping up to the line and we want to take care of you. You work with us; you work with the system to get you more involved, take more ownership and that way you let the different people handle the different tasks and I will suggest the most appropriate people to handle the different tasks. You can see a nurse for a flu shot but you need to see the doctor in the ER. and we really get things mixed up when things go array and we start to get sick. We don’t know who to call. We don’t know where to go. Everybody ends up in the ER and that’s not the right place because that can, I’m not pointing fingers but it can make the situation worse if you’re immunosuppressed and are sitting in a room with 20 other people that have other conditions.
Shirley Williams: Yes,I totally understand that. I mean essentially going into a hospital is essentially where all infections are concentrated and so the likelihood increases or your risk factor increases just by being in that locale.
Kevin Leonard: It’s a crazy statement but it’s true. The worst place you can go when you’re really, really sick is the ER. The best place to go when you’re really, really sick is the ER. So how do you figure that one out
Shirley Williams Question 4: Now is Patient Destiny a movement, an association? How would you describe it?
Rise Of The Patient Guest, Kevin Leonard's Answer: My answer is just yes. I don’t know how to categorize it. We debate that a lot like what is it that we’re doing with and I think we’re trying to raise awareness. It’s like this giant bulletin board or advertising board you see on the highway or something. Get involved. Because I have experienced one thing for sure that when you need help from the healthcare system, certainly the ones that exist in our country when you need it, it’s there. When you say you’re going to work with it, everybody rolls up their sleeves, everybody works with you. But if you don’t show respect for the system, if you don’t care about your own health then there’s a lot of other people right behind you that do and the system will just move on.
So if you’re looking for why didn’t I get the right attention or why am I not doing well, the first person you see is the guy in the mirror and ask "Did I communicate this well? Did I do the best I could to avoid the situation I’m in?" And it’s a long, it’s a long road and I know it’s hard to make a change certainly around, you know, different dietary habits and everything else but that’s the road to health is through you. If you’re not going to do it then how do you expect everybody else to do it for you? You just can’t.
We got a lot of noncompliance. People are given medications or treatments, they get better after a few days and they stop and they were told to do this for ten days or do this for however long the course of meds are and they don’t stick with it and then they wonder well why didn’t I continue to get better. There’s only so much the healthcare system could do. That’s sort of what really the question is out there, you know, the Patient Destiny question. You’re destined to manage your care. You need information so the system is going to give you that but you got to do something with it or just having the information is not sufficient enough to make you better.
Shirley Williams: Great message going out there. Certainly, you need to be more proactive and not so passive.
Shirley Williams Question 5: So for a patient, for our listeners listening in and patients who are listening to this show, how do you get involved, right? I mean how do you get empowered, how do you get involved? Where would you start? So you don’t have an ailment today, how would you get involved to carry that word? What would you suggest?
Rise Of The Patient Guest, Kevin Leonard's Answer: There’s a couple of ways of looking at it. The first one is you know, that the cost of the healthcare system is growing every year so we cannot continue to do what we’re doing, which is like adding billions of dollars to the national budget of healthcare every year. We can’t. We’re going to just blow up at the seams. It’s just not going to work.
So we need to tax the system less; put less burden on the system which means the patients who are using the system the most are the ones that could help us the most. So that’s a good thing. Because it’s not like we’re trying to reach the people we never see. We’re actually trying to reach the people we see all the time.
So these people are called consumers with chronic conditions or someone with a chronic illness. So if you’re diabetic, you have a chronic illness. If you’ve got COPD or a certain case of asthma, you have a chronic disease. Even cancer today is considered a chronic illness. Crohn’s disease, which I have is a family of inflammatory bowel diseases and that’s also a chronic illness. So the ones that are most invested in managing their care with chronic disease are the ones that cost the system the most. It doesn’t mean cost "shame on you"but it means cost utilizing services, utilizing resources. How can we make the system more efficient?
So at the first level to answer the question, in the first level at a patient level, the doctors you see, the nurses you see, we have to keep bringing up " look it, I want to be able to schedule my appointments at a time that is convenient for me. I want to be able to get refills for drugs when it’s convenient for me. I want to be able to check my lab work and let the doctor know that things are great or going off the rails and that way I can expedite the whole process of seeing my physician and getting better." So in other words. instead of having to see my doctor especially 20 times next year, maybe I can only see him three times because we do a lot of communication by email or a lot of things that are standard. If you’re on a drug and you’re just getting it repeated each time you don’t need to see the doctor each and every time. It doesn’t mean you don’t but you don’t need to see them each and every time.
So that’s at the individual level. Start with your own concerns. Start with your own illness. It maybe you, you could be your family member, you could be the caregiver, you can be the patient, it doesn’t matter, start there.
If you’re well and you’re thinking about the system as a whole, then you have to be more involved in campaigning for big change and when I say big change I mean I want to be able to access information, I want to be able to know how my overall profile looks, what choices do I have. Most patients don’t realize that they have choices in drugs, different types of drugs, different types of treatment. Become more involved, more educated and that way you have better discussions when you see your doctors. You try and find yourself a family doctor if you can but certainly when you see them and you’re more involved in asking questions, you’ll learn more. It’s amazing what people learn once they start seeing the relationship between what they do and their health outcomes.
We’ve had lots of clinical, lots of different trials where patients are put on portals and allowed to get access to information and you know, they start thinking well if I eat a lot of pickles, I gain a lot of weight, I got you know, salt that affects my blood pressure. These are the things that doctors have been telling them for years but they don’t see it. They see it.
Shirley Williams: Part of your key message is making that visible so that the patient or the consumer can resonate with the implications of certain health habits?
Kevin Leonard: The patient today I think deals with technology in so many ways outside healthcare I mean. We have technology, we use it everywhere. The only place you really don’t use it is in healthcare and we certainly don’t use it effectively in healthcare. Knowledge is changing. You know, a lot of people tell, oh you don’t know what we’re doing and so on and yes but healthcare is still way, way behind.
If we give people a reason to use the technology they will use the technology. I think a lot of people say well, you know, everybody that’s 70 and older, they’ll never use the cellphone. I mean that’s not true. They just have no reason to use that device and to pay for all that in their daily lives. But healthcare is an opportunity where they will be using it because they need the technology to get their lab work or whatever. It’s amazing to see how many seniors 65 and older are adopting technology for the reason that very reason to manage their diabetes, or the weight condition...
Shirley Williams Question 6: So when you’re thinking of technology that should be used more, what are you visualizing there? I mean what sort of technologies are you thinking?
Rise Of The Patient Guest, Kevin Leonard's Answer: If you go back in I don’t know 20 years, 25 years and we started first thinking about electronic solutions in healthcare, we’re thinking well how do we make the doctor’s life more manageable. How do we count things better? When I say count: How many surgeries do we do? Who do we owe money to? You know, little things that relate to counting where computers have been known to be great at, they do it better than humans and all that great stuff. So that’s where we started.
Unfortunately, trying to automate a physician or a clinician’s office is almost impossible. It’s very, very complicated. It is more complicated. So healthcare is not any different, it is different, okay. So once and for all we can end that debate, it’s different and what’s at stake is a lot different. We’re not talking about losing $1000 to fraud, we’re talking about lives that never come back. So it is a different thing.
But the most important communication [and we started this whole interview around communication and movement of information], the most critical area of communication is that between the doctor and patient, the physician and the patient, clinician and the patient. We have only until now thinking about e-health tools for patients.
Now one great example is something that has come about in the last 18 months or so and that’s called the virtual coach. In other words remote patient monitoring. So patients have a phone, a device, a Blackberry, an Apple whatever that is and yet they also have a condition, maybe multiple conditions. So in a lot of – it’s not broadly used yet but certainly in research trials tremendous significant improvements in healthcare outcomes. Patients let’s say have a heart condition. They get up in the morning and they follow a regimen. One regimen take the blood pressure. The blood pressure cuff they have at home is Bluetooth enabled. It’s all wireless. When you stop to take the measure, it is automatically sent through the phone to some central database. The database looks at past blood pressures and current ones, sends you a message right back on the phone, saying “Hi Kevin,you’re doing great today, see you tomorrow.” Maybe it asks you to check your weight, maybe it asks you to do a number of things and it gets back to you in 20 minutes and sometimes it’s good, sometimes it’s not good. You know, we’d encourage you to get to the ER in the next 10 minutes.
Or the worst, which is don’t move the ambulance is on its way. So it’s that kind of technology which takes a lot of decision making burden away from the patient yet the patient is critical in making that decision.
If the patient doesn’t get on the scale, doesn’t do the blood pressure, doesn’t take the pills, the meds and everything else then there will be no improvement. But we’ve seen great improvement because the patient’s far involved and they like the ownership. They also like knowing that there’s someone there monitoring so that they’re not alone. If something goes wrong, they don’t have to make that decision should I go in or not. I can tell you some of the scariest times in our lives when we have to make that decision, do we go the ER or do we stay here another hour. It’s scary sometimes.
It’s virtual coaching. It’s going to change healthcare and well I’m talking technology I’m talking about just what’s common and current today. Now in five years’ time, I cannot envision what will happen in our hip or in our purses but some way it will allow us to improve that flow of information even better than we can today. We’re not maximizing the technology and why? Because patients aren’t demanding it and patients are going to demand it when they’ve learned the benefits and they see what happens when they get involved.
Shirley Williams: I mean that’s an excellent example. Thank you for sharing that and certainly, you know, I think it will help drive the use of technology, the demand coming from the outside in. Now the example that you’ve given, I would say I mean one of the things I would imagine not only in taking ownership but a sense of empowerment for the patient to be able to be in a position where you think you’re not so much kept in the dark with regards to your own data. You can actually respond with your data and it gives you a sense of control I would imagine.
Kevin Leonard: Yeah, yeah. The big buzzword of course, you know, patient centered care but leading ultimately to patient empowerment.
I know sometimes we cringe a little bit at major terms like, like that and shifting the burden and not and there’s a lot of fear ongoing like, “Oh you don’t want that because you’re going to be left alone and the doctor is not going to care anymore.” You know, that couldn’t be further from the truth. What we want is everybody working together. We have a slogan: Patients as Partners. Patients are not the end product. They’re partners and many could argue they’re senior partners. Because you know, when the lights go out in the office, that’s the end.
Shirley Williams: Question 7: So a couple of things before I go on to your social pearl, I mean you’ve touched a lot on what we should be doing and certain things that you’d like to like to see in the healthcare system. I just want to bring it back to your own personal experience. You were diagnosed at 13. You’ve lived with your condition for over 40 years. Have you seen a change in healthcare over the years?
Rise Of The Patient Guest, Kevin Leonard’s Answer: Well, I’ve seen change in so many different ways. Years ago, I know it’s a little bit scary but I mean years ago we didn’t even sedate the patient when we were doing a colonoscopy and so on and I mean we’ve become more humane, which is a good thing. Number two, I think we’ve become much more effective at treating illness and driving up healthcare outcomes and treatment protocols and you know, in different disciplines throughout the health discipline, certainly through the body and all that different clinical problems. In terms of engaging the patient and harnessing that resource, I haven’t seen, I’m totally being honest but I have not seen much change. I have not seen much movement.
Kevin Leonard: People talk about the patient. It’s certainly a big buzzword patient centered care but they don’t really do it and time after time after time, people will call or say, you know, we’ve got so and so in this committee and then I would ask who else is on the committee and they would say “You’ve got, you know, four and five other people” and not one patient. They didn’t inform me because they wanted me as a patient they wanted me as a statistician. So even though we’re talking about it, we’re not really doing it. And some of it is still we got to drive that message home, we’re not there yet but I think also patients aren’t pushing it either. They need to be more willing to be involved but start with something small like your own care and demand that you get not so much and equal say but at least be able to be involved as a partner and then that will change. But I haven’t really seen much movement in that area unfortunately.
Shirley Williams: I just wanted to get your insights there, you know, and it’s so interesting what you’ve said.
Kevin Leonard: Yeah. It’s odd because the people that really know what it’s like to be a patient with x condition whatever that is are the patients right?
Shirley Williams: Yes, absolutely.
Kevin Leonard: I mean doctors know what they expect but they only know it because of, you know, they’ve witnessed it with other patients or clinically and chemistry and through biology or whatever, they can estimate the time of effect on the physiology and the anatomy and so on. But doctors don’t know what it’s like to be a patient with Crohn’s disease. They don’t know what it’s like to be a patient with three and half feet of bowel that gives you a couple of hours before everything is processed and gone and everything else. And all of the mental and other factors that affect a human being that’s got massive change in the way their body works. It’s not just about well take this pill and get better. It’s there’s a lot of ramifications to the treatment, a lot of ramifications to surgery, to medicines.
And when the doctor said, you know, to me 25 years ago, if you take this in 25 years, you’re going to have problems with your breathing. Like you know in 17 of 25 years. I mean that’s you know, four lifetimes from now. Well it’s a lot more than 25 years and you know, those doctors were right. So he says if you do manage to hang around, there are those issues that keep coming back and so on. And only other patients really can talk to it. We need to find a way to,I don’t know how, to manage it. I mean I work at a university but there should be a course that’s you know, called treating patients or something at med school and it’s about that….treating the patient because every patient I’ve seen, everyone lives in the body of a human being, you can’t treat just the lungs, just the kidney, just the bowel. You have to treat the person. I think that’s the thing too and maybe you know, the solution to all of this lies somewhere in there. Maybe we’re not patient centered enough or don’t think of the patient enough because it’s too difficult to think of it within another atmosphere. It’s easier to think of how do I treat this more than it has a problem. I don’t know. I don’t know the answer but I know that it’s a tough one to get your head around.
Shirley Williams: You know, so I like the concept and you said something very key and that was you really do need not to treat the different components of our bodies but to treat the patient. So on that note then Kevin, we are definitely at our 30 minutes, which is fantastic, some really great key messages there. Thank you so much for that.
Shirley Williams Final Question: And so as we close on this, what I would like to ask like I ask all my guests who have come on the show if you can just step back and just quickly reflect on everything that you’ve said. With our listeners listening in, what would be the key message you’d want our listeners to take away having come on the show and if they just have to hold on to one message, I call it the social pearl, what would be that one final key message you’d like to share with us?
Kevin Leonard: Okay. Thank you. I think that a lot of us think we’re unique and we are unique so I don’t want to start off in the wrong foot but we think we’re so unique that what I’m going through is different from everybody else. Nobody will really understand it. But really there’s nothing like sharing your pain or your joys with other people and finding out that they experience almost the very same thing. It’s one of my favorite expressions you know, misery loves company and it really does. When you’re going through something that’s tough, you’re not that unique. Other people have gone through it too and they can help you with that. So if I have to come up with like a slogan or something, I think in the world we need to realize two things, that we’re all different, we look different and with different interests but deep down all the same. Still all of us are out there experiencing the human condition and all that and trying to get through another day and make life better for others. I think if we just realize that how similar we all are, we wouldn’t have wars. We wouldn’t have all the catastrophes and hatred we have because we could see us in everybody else. And if we think like that then, it will help the patient in the next bed. We’ll fix the healthcare system. That’s what our system, our healthcare system again is based on, that nobody deserves to be sick.