Episode 155: The Evolution of the Parkinson’s Foundation Hospital Care Initiative

Dan Keller 0:02 Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research, the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow. Of the 1 million people living with Parkinson's disease in the United States, more than 300,000 will receive hospital care each year for planned or unplanned reasons. While many of these hospital encounters will be for reasons other than PD, the special needs of people with PD are an important consideration when hospitalized. For example, three out of four of them now do not receive their medications on time. The result can be worse symptoms, injuries, and other complications, longer hospital stays, and increased costs in an effort to address the problem. The Parkinson's Foundation has expanded their hospital care initiative, continuing to include education, awareness, and empowerment of the community, but expanding to drive systemic change across health care systems. This largely will be done through their newly created hospital care recommendations related to areas in which preventable harm frequently occurs. I spoke with Dr. Peter Pronovost, who was instrumental in these efforts. He's been called the godfather of modern hospital quality improvement initiatives. I asked him what started him off on this path.

Dr. Peter Pronovost 2:07 Or my interest was born out of tragedies. My father, when I was a fourth year medical student, came home from the hospital to die. He previously been misdiagnosed with the cancer, and by the time they got the diagnosis right, he was too advanced to get a bone marrow transplant, which is what he needed, and I remember carrying his writing 80 pound body up our stairs, him suffering immensely, and realizing that patients deserve so much better than our health system, I went on to train at Johns Hopkins and did my critical care training and fellowship, and then a PhD in outcomes research, and I spoke with the mother of Josie King. Josie was an 18 month old adorable girl who looked hauntingly like my own daughter, and died of a catheter infection, and at the time these infections killed more people than breast or prostate cancer, but we just accepted them as the cost of doing business, that when you care for sick people, sometimes little girls are going to die, and after she died, her mother, Sorelle, just an amazing woman, challenged me to say, Could you tell me this won't happen again, and I had a moral moment, because at the time I couldn't tell her that, and so I said, you know, Sorell, I can't, but I will, and we launched a program and virtually eliminated these infections at Johns Hopkins, and then in the state of Michigan, and then across all the US, and like, picks other countries.

Dan Keller 3:43 This sounds strikingly similar to Don Berwick's 100,000 Lives campaign.

Dr. Peter Pronovost 3:50 Yeah, this was before that, and this was, you know, really a focused effort on getting rid of these infectious that killed, you know, as they said, more people than breast or prostate cancer, and the sad thing is we knew what to do, we just weren't doing it. I mean, it wasn't like I had to discover science, you know, I had to discover more management of how do you change at scale,

Dan Keller 4:13 right? And this would involve catheter changes on a routine basis, and things like that.

Dr. Peter Pronovost 4:19 It involved mostly a checklist to ensure that people used evidence-based practices, and then changes to make it easy that those checklists could be done, but most importantly, it involves changing the narrative from clinicians assuming that these infections are inevitable to these infections are preventable, and that they are powerful to do something about it. We partnered with some anthropologists and sociologists and studied why did this work so well, and what was special about it. And fundamentally, the answer was, we change people's narratives.

Dan Keller 4:54 I've heard, or I have this idea. Are you a pilot and checklist kind of drive everything, and you would. Adapted it to medicine.

Dr. Peter Pronovost 5:02 I am not a pilot, but I am a student of other disciplines, and I take what I call the transdisciplinary approach, where interdisciplinary research needs different disciplines working on a common problem, but each stays in their own mental model, transportation is different disciplines working on a common problem that draws upon an integrated conceptual framework from each of those disciplines that allows you to get a much bigger risk reduction than you would with anyone alone. So I draw on safety sciences from aviation and nuclear, we draw upon social psychology and teamwork on anthropology on evidence-based medicine, informatics, machine learning, and when we see problems, draw upon, okay, this problem would be really aided by this concept from behavioral economics to note someone, or from aviation with a checklist, most training in almost all fields trains people to be more like an elephant than a jellyfish, and what I mean is an elephant, one long methodological trunk, but know very little about other disciplines. I think a big part of this approach to being successful at scale and safety is being more like a jellyfish, meaning we have one long methodological tentacle, like in this case outcomes research, but then many short tentacles in behavioral economics, or psychology, or social psychology, or systems engineering that we draw upon to align and move the needle in a big way

Dan Keller 6:43 before we turn the discussion specifically to Parkinson's. Do you think that medical training or training in many fields is too focused, becomes tunnel vision? You're talking about bringing in expertise from really diverse fields.

Dr. Peter Pronovost 7:01 Yeah, I think you know, if you look at where innovation comes from, it is almost never from within one discipline. It's at the intersections of disciplines. I think too often we're in myopic in our training, and I'm not saying you don't need methodological training. What I'm saying is that's not enough, because you're not going to solve big problems just being within one discipline, and it's not that I need to be an expert, I'm not a card-carrying behavioral economics or systems engineering, but I know enough to say this principle from there really seems like I should apply it here, and then either apply it if it's practical or connect with someone who is an expert to say, hey, how do we work together to draw upon your discipline to solve this problem.

Dan Keller 7:48 Why don't we turn the focus a little more specifically to Parkinson's disease, and as you're being an expert in patient safety, what can you say about the challenges that people with Parkinson's face in the hospital, and how that compares to other patient safety initiatives you worked on.

Dr. Peter Pronovost 8:09 Patient safety in Parkinson's is really quite early and largely invisible, and let me share with you why. For many harms, like catheter infections, we focus on the harm, and then put evidence-based practices in for Parkinson's. It's their diagnosis that puts them for risk for a variety of harm, including medication errors, aspiration, falls, but most hospitals lack the ability to even tell who might have Parkinson's on a mission, so think about that. Even if I had a checklist, which we're piloting, if I don't know who to give it to, I'm really handcuffed, and many of these harms that Parkinson's patients suffer are invisible to the care team, and so they don't necessarily have focused teams working on it, and I mean, for me, what it's highlighted is there's this whole new realm of patient safety with people who are vulnerable because of their diseases that they have, so people, for example, with severe mental illness, also have very high risk of harm, but not a lot of visibility by health systems, Parkinson's and Alzheimer's are another common one, and we need to find ways to design systems that make care safe for these people in their hospital.

Dan Keller 9:31 There is a lot known about Parkinson's disease medication on time, risk for fall, swallowing, difficulties. So, how do you alert a hospital staff to all of these things, when they see just another patient coming in,

Dr. Peter Pronovost 9:47 that's a really deep question, you know. I think a first one is we have to make sure that people understand the importance and the magnitude of this problem. 75% of patients, Parkinson's. Don't get their medicines on time, which puts them at enormous risk for complications, but I don't think your average hospital leader understands them, and so the first is really awareness raising and making visible the evidence of the extent to which these patients suffer preventable harm when they're hospitalized, and you know that's a big effort that the Parkinson's Foundation and others are working on the second. Is okay now I get people's attention, but I need to develop evidence-based interventions, which we have. As you said, we know so much of the problem is patients just not getting medicines on time or getting medicines that are risky for someone with Parkinson's disease, but we have to be able to find who these patients are, and so this almost always requires some interdisciplinary team within the hospital to work on this collaboratively. You know, some neurologists, but most patients with Parkinson's aren't cared for by neurology, they're cared for by surgery or medicine, because they're not admitted for Parkinson's, they're admitted for something else, they just happen to have Parkinson's, and that puts them at risk for other complications.

Dan Keller 11:08 What broadly is the definition or concept of harm in a hospital? And how do you work towards zero harm?

Dr. Peter Pronovost 11:17 Yeah, so great, great concept. I don't know that there's a standard definition in the literature. I know that harm has been defined too myopically, in my view, as physical harm. So, the way our journey at University Hospitals to zero harm has four domains: zero physical harm from complications, zero suffering from weight or disrespectful care, zero weight, so that is, I'm wasting your time, I'm wasting resources that add to expense for patients and the health system, and zero inequities, that is variation and outcomes by whatever subgroup you want to try to stratify by.

Dan Keller 12:00 Now that you've recognized these four domains of harm, how do you work towards zero harm in each of them?

Dr. Peter Pronovost 12:07 Well, they all have very specific outcomes and key results, and so defining what outcomes are we trying to do, and so they could be falls, it could be excess length of stay, and then what are the key results, or in other words, what are the behaviors that need to change in order to make that happen. So, for example, medication management is a real risk for people with Parkinson's disease. A key thing within that is, do they get their medicines on time, and then defining a measure of what does that mean exactly about medicines on time, because is it every medicine or is it their Parkinson's medicine, and then on time, what does that mean? Does that mean within 10 minutes of when they're supposed to get it, or 15? And so those are all the details that we're working through to have a very robust measurement toolkit that could be spread across hospitals in the US,

Dan Keller 13:02 I suppose Parkinson's medicine on time is time critical, but you would think that interacting medicines, those that cause faster metabolism or slower metabolism than the Parkinson's medication, also have a critical time element.

Dr. Peter Pronovost 13:16 So, you're absolutely right, there's that, and then there's also drugs that interact with their Parkinson's medicine that make it more or less effective or make more at risk for complications, so you're absolutely right. There's a series of measures that we have that have to be deployed, and ultimately, you know, the more these could be embedded into the electronic medical record, the more feasible they could be collected, because doing manual data collection is very costly, and sometimes not super accurate.

Dan Keller 13:45 Plus, it probably doesn't necessarily fit into the standard hospital medication routine. A nurse going around giving meds at certain hours wouldn't quite work for Parkinson's patients.

Dr. Peter Pronovost 13:59 Yeah, so you make a good point, because there's even a policy implications here. For example, most states and most regulators or accreditation organizations don't have tight enough time standards for the delivery of medication for people like people with Parkinson's disease, where being on time is really key, and many hospital policies don't require it. They may allow a four hour window or some longer period of time between when the medicine is due and when it has to be delivered by. I mean, I would go back to aviation, because that approach is just not a risk-informed approach. In other words, having a generic standard would make sense if every medicine that we delivered and every patient had the same risk if their medications didn't meet that standard, but we know that's not the case for Parkinson's. They are at high risk of harm if they don't have their medication, you know, within 15 minutes of when it's due, and so writing a generic standard. When we need a more precise one, is a big problem in helping us get to zero harm.

Dan Keller 15:06 What was your role in the creation of the Parkinson's Foundation Hospital care recommendations, and how do you intend that they could be implemented by experts by hospital administrators on the hospital floor?

Dr. Peter Pronovost 15:20 I was a consultant to Manatt, which is the company that helped Parkinson's Foundation create these, and then worked with them as an advisor or an expert in implementation science and patient safety to say, given all my experience, how do we bring practical strategies to design interventions that could reduce the harm at scale in Parkinson's. I mean, the Parkinson's Foundation deserves so much credit for what they did. They're just passionate about caring for these types of patients, making sure they get the very best care possible, and they have a lot of research and evidence. Now, the point is, how do we package this into a program that could be scaled to hospitals across the country.

Dan Keller 16:04 Does that involve higher levels of hospital administration nursing, as well as even above that?

Dr. Peter Pronovost 16:12 Yes, that's exactly right. Especially, as you know, many hospitals now are most hospitals are part of larger health systems. My hospital has 23 hospitals. You wouldn't want to go implement this at every one of those hospitals. It's much more efficient to get whoever runs quality or safety for the system to design this, and then deploy this across all the hospitals. You know, that's how we run all of our zero harm efforts at my hospital. So, this would fit that same mold, but it requires that you're often interacting with a higher level corporate executive.

Dan Keller 16:46 The recommendations outline standards of care. Can you briefly walk me through what those are?

Dr. Peter Pronovost 16:53 They're relatively straightforward, but not commonly done. The first is that patients with Parkinson's disease receive their Parkinson's medications according to their at-home regime, which is very specific, and plus or minus within 15 minute boundaries 100% of the time. Second, that contraindication medicines are eliminated in patients with Parkinson's disease, and then third, if patients with Parkinson's disease receive activity orders, that means to get out of bed and walk 100% of the time, and just these three things would do so much to move the needle on their safety.

Dan Keller 17:34 And what about evaluating swallowing? Is that in there too?

Dr. Peter Pronovost 17:38 Swallowing is another key part of this, many patients with Parkinson's have twilight disorders, but they aren't routinely screened for that, and as such, they're at risk for having an aspiration pneumonia.

Dan Keller 17:54 What can patients do for themselves? There's so many hospitals, probably not participating in this. How can they assure that they're getting the best care?

Dr. Peter Pronovost 18:03 So, great question. A couple of really key things is when they're admitted to the hospital to make sure that they tell the doctors and nurses that I have Parkinson's disease, that it's really important that these medicines are given on this schedule, and hopefully they'll bring that schedule with them. Could we ensure that I will get these medications within 15 minutes of their admitted time? Now, many hospitals don't have systems in place, so they're going to have to create something to help them do that, but engaging the patient with the care team to figure out how to do it, oftentimes having the pharmacist part of that discussion is very helpful. Also, and in many hospitals, patients are allowed to take their own medicines if they bring it in, and that kind of assumes the patient is cognitively and physically able to do that. But if they could, that's another way to say, okay, well, I understand you may not be able to get to me on time, but I have my medicines, and I'd like to then take them myself at these time schedules.

Dan Keller 19:08 What are you most gratified about when you think about the path that the Parkinson's Foundation is taking to systematically improve care for people with Parkinson's in hospital?

Dr. Peter Pronovost 19:20 What makes me so gratifying is the potential to relieve harm and suffering at scale. When you look at the data, the amount of suffering, needless suffering, and harm in these patients is just immense, and for too long it's been invisible and under appreciated. And what the Parkinson's Foundation has done is make it visible, shown the huge impact, and then devised practical ways to reduce that. The magnitude of the impact that this effort could have across the country is just so heartwarming and humbling, heartwarming because it's the opportunity. The relief suffering is huge. Humbling is because we still have a fair bit of work to do, but I'm confident with their leadership and the teams that they've put together that they will make a significant impact on this across the US.

Dan Keller 20:15 From what you just said, it sounds like this is not necessarily a fait accompli. What further improvements or initiatives might you have in mind.

Dr. Peter Pronovost 20:26 Some of this could be to get some of our national quality measures to stratify outcomes by people with Parkinson's disease or people with severe mental illness. In other words, just like I said, having one standard for everybody when the risk varied, isn't patient-centered, and doesn't make sense, like that. We need measures of vulnerable populations that we could include in our national measures, and those are.. that's another area that there's some effort that we're pushing on to try to make these visible, including these bundles or these evidence-based practices in either regulatory requirements or other national quality improvement efforts could help accelerate the use of these, like you say, the equivalent of the 100,000 lives. Something about Parkinson's disease was incorporated, or they're incorporated into safety scores, like the Leap Frog score, or other grades that hospitals are incentivized to improve safety.

Dan Keller 21:25 Would you go so far as to think that maybe reimbursement or Medicare should be dependent on meeting some of these standards?

Dr. Peter Pronovost 21:35 Yes, without a doubt, we know that CMS now has penalties for several complications. The tricky part, and I don't want to go into the policy discussion on this, but the penalties have proved disappointing, whether that's that they're not severe enough or they're not designed well enough. Let me give you an example to do this. Most hospitals are going to need to make an investment in infrastructure, right, because it doesn't exist. They don't know how to identify Parkinson's. They may not be able to deliver medicines on time, so they may need some supports that right now in America. 50% of hospitals have negative margins, so if you implement a penalty, but without providing some resources to build that infrastructure, it might very well make it worse. I mean, most likely it would make it worse, and so some of the models that I've been floating out around first provide support to build the infrastructure, and then provide the penalties for accountability for performance to me, like so it's just thinking through incentives in different ways.

Dan Keller 22:44 This sounds like it gets back to very old behavioral psychology, where negative reinforcement wasn't so hot, but positive reinforcement, whether it was people or animals they were testing, worked better.

Dr. Peter Pronovost 22:57 Yes, and that's why, as I mentioned, our national poverty effort didn't work because of a penalty, it worked because people changed their belief that these infections are preventable, and it's my job to do something about that, and so we'll very much be trying to work through changing that narrative, so that people see that these harms in patients with Parkinson's are preventable, and it's part of my job as a hospital executive or clinician to do something about it. I've been working on quality improvement a long time, and I come to believe that the secret of great care is love, and I say that because love is this energy that uplifts and connects us all, and so it treats everybody with respect and gets ideas and allows us to innovate more, because we're all connected to this common energy, and love is powerful enough for us to stand in our bright light and celebrate the hospitals or the teams that do something great, but also to be under the spotlight, and to be accountable for our shortcomings, not in a judgmental way, but in a learning way that we work towards zero harm together, and that is what really led us to the reductions in infection, and I think it's what's going to be the most effective way to reduce harm in patients with Parkinson's.

Dan Keller 24:30 To find out more about the Parkinson's Foundation Hospital Care Initiative, search our website @parkinson.org for hospital care, and scroll through the listings until you see hospitalization, and to prepare for a possible hospitalization, you may want to order one of our hospital safety kits. It explains the risks associated with hospitalization for people with Parkinson's and how to prepare to get the best possible care. For information on the kit and how to order one, search the site on hospital safety. The Parkinson's Foundation is committed to leading the national effort to improve hospital care through systemic changes in areas of policy, technology, culture, and education. Our hospital care initiative aims to eliminate preventable harm and promote higher reliability in care for people with Parkinson's in the hospital. Through this initiative, we have developed key tools and resources for patients and providers. The Parkinson's Foundation Hospital care recommendations were created in partnership with Hackensack Meridian Health, Henry Ford Health, and the University of Florida Health Norman Fixel Institute for Neurological Diseases, with support from Dr. Peter Pronovost and Manatt Health. You can download these hospital care recommendations by visiting parkinson.org/hospitalcare. On this page, medical professionals can find more information on the Parkinson's Foundation quality care initiatives, along with a list of online courses on the Parkinson's Foundation Learning Lab, discussing how to provide optimal hospital care. If you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. If you enjoyed this podcast, be sure to subscribe and rate and review the series on Apple Podcasts, or wherever you get your podcasts. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every other week. Till next time, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO, that's 1-800-473-4636. Thank you for listening.

Peter Pronovost, MD, PhD, is a world-renowned patient safety champion, physician executive, critical care physician, prolific researcher with more than 1000 peer-reviewed publications, an innovator who has founded several technology companies, and a thought leader informing U.S. and global health policy. 

Dr. Pronovost’s transformative work leveraging checklists to reduce central line-associated bloodstream infections has saved thousands of lives and earned him national acclaim. This life-saving intervention has been implemented across the U.S., and as a result, central line-associated infections that used to kill as many people as breast or prostate cancer have been reduced by 80 percent. In recognition of this innovation, his highest-profile accolades include being named one of the 100 most influential people in the world by Time Magazine and receiving a coveted MacArthur Foundation “genius grant.”   

While serving as Chief Clinical Transformation Officer at University Hospitals Health System in Cleveland and as a Professor in the Schools of Medicine, Nursing and Management at Case Western Reserve University, Dr. Pronovost developed a checklist to make visible defects in value and deployed a management and accountability system to eliminate those defects.  

This system reduced the annual cost of care for Medicare patients by 30% over three years while improving quality.  In 2022, Dr. Pronovost lead the efforts that culminated in University Hospitals winning the American Hospital Association’s Quest for Quality award, the industry’s most prestigious honor recognizing its member organizations for their commitment to quality. He was named the Veale Distinguished Chair in Leadership and Clinical Transformation in 2023.