Join journalist, author, and the director of MIT’s Graduate Program in Science Writing Seth Mnookin as he chats with Stanford University physician and medical journalist Ilana Yurkiewicz about the personal toll of America’s disjointed system of medical records. Also in this episode: host Kasha Patel takes part in a novel citizen science experiment, and scientists hook up sensors to trees in Estonia to study how extra humidity from climate change will alter forests.

Below are the individual segments and a full transcript of the podcast, lightly edited for clarity. You can also subscribe to the Undark podcast at iTunes or listen on Spotify.

 


Kasha Patel: Hey Undark listeners, in late August, I actually participated in a citizen science project that studies how different parts of the city trap heat. I had to attach a long, skinny, white plastic tube that measures air temperature to the side of my car and let me tell you, it started really early and I was not a happy camper.

Kasha Patel on Tape: Okay, it is 6:01 a.m. and I am not a morning person. I am so tired. But I’m in my car and I’m coming out of my driveway. Right now even though it’s 6 a.m. it is pretty humid. It’s a little cooler because obviously the sun isn’t up. Alright, I’m coming out of my driveway.

Kasha Patel: Oh boy. I did not realize I sounded that tired. The temperature sensor actually records the temperature every single second. So as I drove around, it would sync with my GPS data to give a second-by-second breakdown of the temperature outside. I was supposed to drive around for an hour, at three different times — 6 a.m., 3 p.m., and 7 p.m.. And I had to take the same route every single time.

Kasha Patel on Tape: I’ll take a right onto Franklin Street. It’s not a good street at 3 p.m. when I have to go back because it’s going to be crazy.

Kasha Patel: I did not finish my 3 p.m. route because, as I expected, I hit rush hour. I did complete about 70 percent of my route, so I’m hoping that didn’t completely invalidate the results. The point of the project is to study the urban heat island effect. Basically, that means more developed areas in cities like Washington D.C. tend to be hotter than vegetated areas. That’s because unshaded roads, concrete, and buildings tend to absorb heat and then radiate that into the surrounding air, which increases the local air temperature.

The researchers leading this experiment are from the Science Museum of Virginia in Richmond and Portland State University in Oregon. They want to create a detailed map of the temperature differences over different land-use, meaning black asphalt versus concrete versus shaded neighborhoods versus parks versus parking lots. To get the high-resolution data, they asked me and a bunch of other volunteers to drive around in nine different cars through nine different neighborhoods in D.C.

Kasha Patel on Tape: I guess I should probably go by Union Station. That has good land-use I think. Hey, I just saw friend! I just saw another person on the road with the little temperature sensor. Cool.

Kasha Patel: They actually did this project before in Richmond last summer in 2017. They found that on one of the hottest days of the summer, areas with lots of infrastructure tended to be 16 degrees Fahrenheit warmer than shaded areas.

Then they took this high resolution map and compared it to a map of emergency calls received by the Richmond Ambulance Authority for heat-related illnesses. They found that the two maps coincided. The hottest areas in the city also had the most heat-related emergencies. The Sustainability Office for the City of Richmond saw this data and decided to take some action. Next summer in 2019, they’re going to go to the hottest places and add “community cooling stations” which are just resources that help people cool off, so a big mist fan, or cold water bottles, or some kind of an air-conditioned infrastructure.

And now they’re doing the project in D.C. and Baltimore with funding from the Climate Program Office at the National Oceanic and Atmospheric Administration.

Kasha Patel on Tape: Aw man, I’ve never recorded my traffic infractions before. I was in a turn-only lane but I wanted to go straight. Why did I decide to record this? Oh right, for the love of the podcast. Whew.

Alright, 7 o-clock. I gotta do this two more times and then we’ll look at my data. Signing off.

Kasha Patel: I finished my three traverses, and I gave back the sensor on the very same night because the next morning they were going to Baltimore to do it all over again. And now it’s been about a month since I did the campaign. So I wanted to see what the researchers found out. So here I decided to call up one of the leaders of the initiative.

Jeremy Hoffman: I’m happy to help out. How can I be useful for your story?

This is Jeremy Hoffman, a climate and earth scientist from the Science Museum of Virginia in Richmond.

Kasha Patel: What did you do with the data we collected?

Jeremy Hoffman: I think the campaign in D.C. was an absolute success. I think there was something like 70,000 data points [that] went into all three of the time periods. This is very much built around a model. So the model that the Portland State guys use actually used the land cover underneath the observations that we ourselves took to predict what the temperatures would be in between those points based on the land use.

Kasha Patel: Interesting. So we gave you data points over the different types of land-use and then you used satellite data and your model to fill in the gaps of temperature readings across the city. Cool. What did you find overall in our D.C. results?

Jeremy Hoffman: The coolest areas are the most heavily-shaded, wooded areas that you can get to. For example in Baltimore, Leakin Park, or there’s one particular road that I was on in West Baltimore that we saw almost 10 to 12 degrees Fahrenheit reduction from just a couple blocks away. It’s really that extreme difference between those big expansive built environments and then into the most dense wooded environments that we see the largest temperature differences.

Kasha Patel: Oh wow. I didn’t quite finish my 3 p.m. route. Was I the only one in the D.C. cohort that didn’t finish their 3 p.m. route?

Jeremy Hoffman: One thing that I was really concerned about was the amount of traffic that we’d have to deal with that we wouldn’t get as much data as we usually do from other cities, but it turned out to be not a problem at all. So even though some people didn’t make their full traverse in the afternoon, we still wound up with enough information to pretty precisely predict the temperatures in the model surfaces.

Kasha Patel: Cool. What do you hope the average person walking down the street understands by learning about urban heat islands?

Jeremy Hoffman: That’s a very good question. What do I hope the average person learns? I think it’s the fact that every decision that we make as far as increasing the area of our cities in changing those natural landscapes, any decision made without this information potentially has the ability to exacerbate the issue. Every building that we put in is an opportunity and no matter what, we need to be making progress on adapting to and becoming more resilient to climate change.

Kasha Patel: When you say that every building we build is an opportunity, you mean an opportunity for…

Jeremy Hoffman: Yeah, no, every single new development and building is an opportunity to reduce the potential for health impacts, to reduce urban air quality issues, to reduce energy usage. They can have green roofs that absorb more rainwater and reduce the surface temperature of that roof, which reduces the internal cooling load. They could have green walls that absorb more of the ozone that’s generated from the emissions that are coming out of our cars and infrastructure. They could have these heat-resistant building materials that don’t absorb as much of that heat. It’s really amazing. We know so much about this phenomenon now that every single building that doesn’t take it into account makes the problem worse and was a missed opportunity. Maybe that’s the better way to describe it, is that every single new redevelopment of an area has the ability to fix this problem and so every one that gets built without this information being incorporated into its design is a missed opportunity to keep our people healthier and safer and more resilient to climate change.

Kasha Patel: Ah, okay that makes sense. Thank you so much. This was really a fun project. I’m really glad that I got the opportunity to do this.

Jeremy Hoffman: Well I’m really glad you did too.

Kasha Patel: That was Jeremy Hoffman. They’re currently processing all of the data and will be releasing the data in a paper at some point in the future. But you got a sneak peak of the project and initial results here.


 


Okay, I’m ready to move out of the city and get away from this urban heat island effect. Let’s travel to a nice shaded place where it is much cooler. We’re joined by Kata Karath who will take us to an experimental forest in Estonia where scientists are hooking up sensors to the trees to study how extra humidity from climate change will change how the forest grows.

Ingmar Tulva: There are about 20 to 25 sensors. We might find some of them, although the grown vegetation is a bit too big. There are several, several….

Kata Karath: That’s Ingmar Tulva, a plant physiologist at the University of Tartu. He’s shifting through the understory to show me a bizarre web of cables and sensors entwining the trees. We’re in a small forest tucked between the hills of Southern Estonia, and even though it’s a hot and sunny day, a fog lingers in the branches above us.

Ingmar Tulva: This is a humidity plot where we increase humidity actually, hence there are ventilators are working. You can see the fog being generated here from these nozzles, simply several atmospheres of pressure squeezes water through very small holes. This is what makes the noise — the fog.

Kata Karath: This hardwired forest of silver birches and hybrid aspens we’re standing in is a one of a kind climate change experiment called Free Air Humidity Manipulation…or FAHM for short. Here, with the help of a fog-making robot, researchers are trying to predict what the forests of the future might look like. As our world warms, huge swaths of North America, Europe, and Asia are expected to become more humid. And no one yet fully understands what that will do to temperate forests.

Ingmar Tulva: One of our initial hypotheses when we built this site was that if we increase air humidity, then it will decrease water demand and probably this should be somehow beneficial for the trees

Kata Karath: To test that theory, Tulva and his colleagues plant plots of trees and manipulate how wet the air is while they grow. The web of sensors monitors things like natural humidity and windspeed to automatically adjust how much mist is blown through a given plot and keep humidity at a constant, elevated level. Then, the researchers can measure not just how large the trees grow, but how they grow — the ways they use water, or nitrogen, where they store nutrients, and how soil humidity changes, and more.

Ingmar Tulva: We attempt to do the measurements in as close conditions to natural as possible, but also as we have found out, it is not very easy to achieve, we always end up affecting several other things that we ideally should not.

Kata Karath: For example, it took them two years to tune the mist so it raised air humidity without soaking the leaves in liquid water. Climate change hands scientists a mess of variables — temperature changes; extreme weather changes; humidity, methane, carbon dioxide increases….Experiments like FAHM try to tease those threads apart and look at just one factor to see how a forest might change, but it’s quite a project.

David Ellsworth: Climate change experiments in particular have to measure and quantify the background climate as well as your experimental climate and do it very well. And working in remote places and doing the experiments in remote places poses a whole ‘nother set of challenges.

Kata Karath: That’s David Ellsworth, a professor of plant ecophysiology at Western Sydney University. I called him to learn about a similar experiment to FAHM that he’s leading. But he is flooding his native Australian outback forest with carbon dioxide instead of humidity — bumping the concentration of CO2 up to 550 parts per million, the levels we are expected to hit by 2050. Since trees breathe in carbon dioxide, if they mop up extra CO2 and store it in their wood, forests could offset emissions.

David Ellsworth: We have seen a strong increase in photosynthesis in the trees in elevated CO2, but we have not seen an increase in the growth and productivity of the trees.

Kata Karath: Ellsworth found that when he gave trees extra carbon dioxide, the trees converted carbon dioxide into energy faster, but they weren’t growing an extra amount.

David Ellsworth: Either the carbon is circulating through the system faster and so, it’s been taking up faster but also going back out of the system through respiration faster, or it’s being stored somewhere we haven’t found yet.

Kata Karath: So the plants might be locking up carbon, or they might just be breathing it out at night. Ellsworth and his team are now trying to figure out where that carbon might be stored, if it’s not being used to make the tree taller. Already, he has discovered their forest in the Australian outback acted differently than forests under similar climate conditions elsewhere in the world.

David Ellsworth: Here we are in very poor soils that are often limiting in the nutrient phosphorus and we think that might constrain the growth of the trees, and limit their ability to respond to high CO2.

Kata Karath: That’s why researchers need to run these forest experiments around the world —to pinpoint not just what changes, but why it changes in a given location. Then, they can tailor their forecasts and, for example, predict how much of our emissions a specific forest will be able to store.

Back in Estonia, Tulva shows me the heart of the experiment — a small lab in a trailer where all cables meet. After more than 10 years of studying the forest, he says there are some impacts of the future climate they can predict.

Ingmar Tulva: We quickly found out that actually the trees don’t like increased humidity in this latitude. Actually for several, probably quite complicated reasons, they tend to grow worst in elevated humidity.

Kata Karath: Tulva and his colleagues also believe they managed to find the root of the problem — almost literally.


Ingmar Tulva: The water that is in the leaf, it comes from the ground, through the roots, through the trunk, and this upward movement of water actually carries also nutrients from the soil and increased air humidity slows this movement. Apparently, this creates something of a trouble for tree — it cannot get these nutrients from the soil anymore. And this is what we suspect is the main cause of actually growth retardation.

Kata Karath: What keeps puzzling Tulva is that eventually the growing rate returns to normal.

Ingmar Tulva: Eventually they seem to kind of cope with new conditions and begin to keep the same pace as in the control areas.

Kata Karath: But he can’t yet answer the question of how much damage this early slow growth does to an adult tree. By the time they could study this, the trees are too big to successfully surround with humidity and have to be cut down. Ellsworth needs cranes and 60 foot scaffolding to monitor his native forest.

David Ellsworth: The other thing about forests is that they can be quite slow growing and we want to observe responses that are significant over a number of years, so it does take some patience in your experiments as well.

Kata Karath: But he also says that the rate of carbon emissions puts a time pressure on experiments like this. He says they need to produce results in five to 10 years, much faster than a lifetime of a tree, so they can pinpoint the problem, not with utmost accuracy, but well before it’s too late.

Experiments like this in Estonia and the one down under are still trying to understand the effects of individual aspects of climate change. Looking at their impact together will be an entirely different challenge. They are all racing with time, trying to understand how entire forests will live and die, but within the scale of our human lives.

David Ellsworth: We can predict the future of them as best as we can, but we won’t know exactly what will happen until it’s upon us.

 


Kasha Patel: For our feature this month, we’re looking at a Case Study written for Undark Magazine on medical record fragmentation. The author writes “Every year, an untold number of patients undergo duplicate procedures — or fail to get them at all — because key pieces of their medical history are missing. Why? To help us figure that out, Seth Mnookin is filling in for David Corcoran. Seth is a journalist, author, and the director of MIT’s Graduate Program in Science Writing. Seth, thank you for joining us.

Seth Mnookin: Hey Kasha, Thanks for having me.

So, it is my pleasure to welcome to the show, Ilana Yurkiewicz, who is a physician at Stanford University and also a medical journalist. She is a former Scientific American Blog Network columnist, and her writing has appeared in all sorts of outlets, including Aeon, STAT, and of course, Undark recently. Ilana, welcome to the program.

Ilana Yurkiewicz: Thank you so much, Seth. It’s great to be here.

Seth Mnookin: So Ilana, can you tell me what you wrote about for Undark, and you had a patient, Michael. Describe what happened to him.

Ilana Yurkiewicz: So, I wrote a piece about the story of fragmented medical records that centers around a real patient I cared for, named Michael Champion, and his wife Leah. Michael was discharged from the hospital to a nursing facility, came back in, discharged a second time, and then came back into the intensive care unit, all because of pieces of his medical record that fell through the cracks.

Seth Mnookin: I want to read one passage that I just thought was so eloquent. You wrote, “When a patient with a complex medical history like Michael arrives under my care, it’s like opening a book to page 200 and being asked to write page 201. That can be challenging enough, but on top of that, maybe the middle is mysteriously ripped out, pages 75 to 95 are shuffled, and several chapters don’t even seem to be part of the same story. Meanwhile, everyone around me is urging: write now,” and write, W-R-I-T-E now. So, what do you mean exactly by being asked to write page 201?

Ilana Yurkiewicz: I mean, when someone comes into the hospital like Michael, it’s not like I have the luxury of saying, “Okay, let me take a week and read through all your records and think about it, and read through pages 1 to 200 of your personal story.” They’re coming in because they have a problem right then, and they want that problem to be solved. And sometimes you know, it’s not coming. The patient’s not asking for their problem to be solved, but the medical reality is requiring that I act now. And so, in the … We have to make decisions relatively quickly, without the luxury of reading the entire story.

I’ve wanted to write a version of this article probably since my third year of medical school, when I first got exposed to the story of fragmented medical records. And over the last few years as a practicing physician, I felt like I had a front row seat to the story of fragmented records. And it played so much into my day-to-day life. So, so much of my job actually entails not just making medical decisions, but trying to put pieces together from when patients went from one hospital to another, to get the story straight. And that didn’t feel right to me.

Seth Mnookin: Was there something specific that occurred in medical school that made you either want to write about this or sort of realize that this was going to be an ongoing issue, not only for the medical profession but for you in your career?

Ilana Yurkiewicz: Yeah, so I noticed something. It was a story from my third year of medical school when I was in Boston, and we had a patient transfer to our service. And this patient had just been at a hospital directly up the block, and she had a CT scan of her chest that was done that morning. And then she transferred to our hospital and we were not able to see the results of that CT scan that she had a few hours ago. We were debating what to do, because we were trying to make a decision about how to treat what we presumed was an infection in her lungs. And then after a few minutes of back and forth, the attending physician basically just put his foot down and said, “Well, get her back in the CT scan and scan her again.”

I remember looking out the window of the hospital and being able to see the other hospital. You know, directly up the block, and thinking, “I could run there and back faster than it would take to get the CDs mailed over,” which is what we would wait for otherwise if we didn’t repeat the scan. And meanwhile, she was getting another scan, you know getting the same amount of radiation to her body that she just had a few hours ago, and I thought that didn’t feel right.

Seth Mnookin: Why was it that you couldn’t get the … I mean, why couldn’t literally you have gone across the street, or just called up the other hospital and said, “We have this patient here. We understand that he or she just had a CAT scan. We need to see the results.”

Ilana Yurkiewicz: So the viewing system that we had at our hospital was a separate vendor from the viewing system at the hospital across the street.

Seth Mnookin: So, literally just different software?

Ilana Yurkiewicz: Different software. So I would have had to go across the street, and I could have done this. Those images were stored on a CD. And I would have had to pick up the CD, come back to my hospital, walk it over to the radiology department, have them upload it into our system. Have our radiologist read it, which is a very roundabout way to see a scan that was just done.

Seth Mnookin: Right, right. Huh, okay. Then, tell us a little bit specifically about Michael’s case, about how he presented when he first came in, when you first saw him. And then it sounds like you had some trepidation, even on that initial discharge. So, tell us a little bit about that.

Ilana Yurkiewicz: The most dangerous part of a hospital stay is actually the discharge part. Because that’s when they’re going to a new facility, and things can and do fall through the cracks. And it happens all the time. So Michael’s story was that he was admitted for an infection the first time around.

Seth Mnookin: And he was an older patient, is that right?

Ilana Yurkiewicz: Yeah, he was an elderly patient, who was mostly cared for by his wife, Leah. So he came in for an infection, and then because of the infection, his blood sugar was running high. Higher than normal. So we ended up having to adjust his insulin regimen, too, and then I clearly marked in my discharge summary how to do the new insulin regimen. But by the time he made it over to the nursing facility, somehow that plan had fallen through the cracks.

Seth Mnookin: You describe a really heartbreaking moment where you were told you had a new patient, and you pulled back the curtain, and you saw that it was Michael and he was back there again.

Ilana Yurkiewicz: Yeah, so the first time around, the first time he was discharged, he came back less than two days later. So things really went wrong, as Leah put it, the moment he arrived. And he came back because his blood sugar was running high and she was also concerned that he was starting to develop a fever again. The reason his blood sugar was high was because he was not getting the extra insulin that we had tried to make so clear in his discharge summary, that he would need because he had an infection.

Seth Mnookin: Can you describe the events after he left your care for the second time?

Ilana Yurkiewicz: There was some stuff that was done correctly, but one thing that fell through the cracks was the water that he needed along with his tube feeds.

Seth Mnookin: Right.

Ilana Yurkiewicz: So, tube feeds only provide nutritional formula. They don’t actually give you plain water, and I actually remember putting asterisks around that part in my discharge summary. But that was the part that fell through the cracks and I never found out exactly what happened, because there was no record of his stay that I could have access to at that nursing facility. But he didn’t get the right amount of free water that we were giving him in the hospital, and when that happens, the sodium in your bloodstream can rise to extremely dangerous levels, and make people comatose. Which is pretty much what happened. He came back to the intensive care unit with a sodium of 164, and just for reference, the upper limit of normal is 145. So he was nearly 20 points higher than that.

I kinda mentioned in the end of the piece, I retraced their steps two years later, trying to figure out exactly where the breakdown was. And I never did, and I think that’s very notable because there was no record that I could find at the nursing facility two years later of what happened. I found that those records were stored in a paper binder that was in a storage unit somewhere that I didn’t have access to. And I think that’s the crux of the story right there, is that we do all of this work and then the records go missing. They vanish.

Seth Mnookin: Right, right. I mean there were a lot of astounding things in your piece. It was an incredibly moving piece, and also a very frustrating piece as I’m sure the experience was for you. But one of the things that really struck me is, you talked about how you typed up this discharge summary and how you knew even at that point that you had to bolster the discharge summary. So you used simple and straightforward language. You bolded exactly what needed to be done, you double checked the medication list. But it sounds like for all you did, you could have just essentially sent him out with a post it note on his forehead that said, sick, and there would have been essentially the same amount of communication between your facility and the nursing home.

Ilana Yurkiewicz: Yeah, and I think it’s incredibly frustrating, and it’s dangerous to patients and it’s frustrating to providers, because I mean, I think it’s a story of bad outcomes, without bad characters. And everyone was doing the best they could to try to put the pieces together and pass them forward. But I knew that all the nursing facility would receive was that sheet of paper that I wrote, which is why I tried to bolster it as much as possible. You know, I knew they wouldn’t have any prior records, like prior lab values, how his insulin had been managed before this hospitalization.

Seth Mnookin: You obviously take and took great care in saying that someone is not at fault here, but also sounds like there certainly were not any extra efforts made at that nursing facility to find out what might be needed.

Ilana Yurkiewicz: I think that’s true, but I also think, you know they shouldn’t have to go above and beyond. They shouldn’t have to call the hospital every time a patient transfer happens. This is all supposed to be taken care of by the system. I mean, it’s asking for such a huge burden to be placed on health care professionals who are busy doing other things, like taking care of patients, to be also doing the work of data collection.

Seth Mnookin: Right, sure. Yeah.

Ilana Yurkiewicz: The hardest part of medicine should not be the data collection, and so you know I don’t blame them. I don’t blame them because I’ve been in that position myself. I’ve been in the position where I’ve had a patient come to me and I don’t have all the records. And I’ll do my best and sometimes I can call other places, and sometimes I’m able to reach somebody and sometimes I’m not. And the system should be doing all of this for us. That shouldn’t fall on the shoulders of busy health care professionals. And the reality is, the more that it falls on their shoulders and the more cumbersome the process is, the less likely people are to do it properly.

Seth Mnookin: You write very convincingly about why we need a consistent, cohesive system for health records. So, in 2004, President George W. Bush created this thing called ONC, O-N-C, within the Department of Health and Human Services. What is ONC? What does that stand for?

Ilana Yurkiewicz: So, ONC stands for the Office of the National Coordinator for Health Information Technology.

Seth Mnookin: Got it, okay. And then, I think five years later, is that right? In 2009, that was when Congress authorized and funded legislation known as the HITECH Act. The Health Information Technology for Economic and Clinical Health Act. A strained acronym if there ever was one. But what was that, what was the HITECH Act, and what was that meant to achieve?

Ilana Yurkiewicz: The goal of the HITECH Act was to convert paper records at hospitals into electronic charts. And they were allotted a lot of money to do this, and to their credit, most hospitals did this very successfully. So, before 2009, we did use paper records a lot more. After that, we do use electronic records but the problem is that, there are hundreds of different vendors who own these electronic health record systems, and those vendors were not communicating with each other. So even though different hospitals had all of their information in an electronic form, it couldn’t be shared from one hospital to another. And I interviewed Karen DeSalvo in this piece, who was the director of ONC from 2014 to 2016.

Seth Mnookin: So you say, she was the person within the Department of Health and Human Services who was sort of in charge of overseeing this? Overseeing the digitization of care, essentially.

Ilana Yurkiewicz: Yeah, so she was tasked with taking all of these different vendors that weren’t speaking to each other and trying to get them to talk to each other.

Seth Mnookin: Right.

Ilana Yurkiewicz: Which is a huge deal, and it’s a bureaucratic and engineering nightmare. And I think people have been working on this, and we just haven’t made the progress that we’ve been promised, since 2009 when all of this began.

Seth Mnookin: And is that essentially just a software problem, or is that because they wanna bring as many people as possible? Obviously, every company wants to bring as many people as possible under their umbrella.

Ilana Yurkiewicz: It’s a little bit of both. So, there are companies that do charge fees in order to share data with other companies, but at the same time, it’s also just an engineering question. It’s trying to make different systems standardized. And when I interviewed actually, Mark Savage for this piece, he was-

Seth Mnookin: Mark is the director of Health Policy at UC San Francisco’s Center for Digital Health Innovation, right?

Ilana Yurkiewicz: Yeah, that’s right, and he was talking about the standardization process, and he made the analogy that didn’t make it into the final version where, he said, “Imagine going to a car rental place and you’re looking for the gas pedal, well maybe it’s in the back seat.” And I thought that was a perfect analogy to describe our health care system and the importance of standardization. Like driving a car, making health care decisions, it’s too important to start fiddling with the system. You know, we should have something that’s standardized and easy to use, so that we can focus on the more important questions.

Seth Mnookin: Yeah, I mean I couldn’t help thinking in reading your piece that, if there was a moment of original sin here, it was not including a requirement for standardization in that 2009, in the HITECH Act, and requiring that at the outset could have sort of saved us from a lot of headaches and aggravations down the line.

Ilana Yurkiewicz: Yeah and you know I think some competition is okay. It’s okay to have different vendors. I don’t think that’s necessarily the problem. We don’t just need a monopoly from one vendor, but they do need to use a standardized format of data entry and collection, so that doctors aren’t struggling with it.

Seth Mnookin: Right, right, yeah. Another point that I found really interesting in your piece, and I guess when I thought about it, it wasn’t as surprising as it seemed at first blush, but that’s that sort of the least problematic aspect of this is, patients wanting to safeguard their privacy. That in fact, 95 percent of patients have no problem sharing all of their medical information across all of their different caregivers. I think you’re right, that patients are probably the biggest advocates for sharing medical information. That’s something that initially I did find surprising. Is that something that when you learned that, were you surprised by, or did that seem to resonate with your experiences as a doctor?

Ilana Yurkiewicz: It resonated with my experiences. So, I think Mark Savage’s data confirmed, or was in parallel with my personal experiences. And I say something in the piece like, I’ve actually, thinking about it now, I’ve never had a patient be upset with me because I knew too much of their medical history, or ask, “How did you know that?” But, they’ve been upset with me because I didn’t know aspects of their medical history. And most patients assume that their doctors are talking to each other, and that their doctors are sharing information. And I think Mark Savage’s data just backs that up so much that, this privacy concern is a bit overblown.

Seth Mnookin: Well this is, you can probably tell, this is a topic that I can talk about forever. I find this fascinating. There are just a couple of more points I wanted to touch on. One that I found really striking was the number of people that die in hospitals every year due to preventable medical errors. And you talked about how the Institute of Medicine, now the National Academy of Medicine, published a report almost 20 years ago, about how between 44,000 and 98,000 people die each year in hospitals from preventable errors, but the actual number today could be almost 400,000 deaths per year. Which is incredible. That made me then go look up the number of deaths caused by other things. Just for a point of reference, guns cause 33,000 deaths a year in the U.S., so less than a tenth of what are attributed to preventable medical errors. Cancer causes … Well, heart attacks I think, cause around 600,000 deaths per year. Does that sound, am I getting that roughly right? So a little bit more.

Ilana Yurkiewicz: Yeah.

Seth Mnookin: But it made me think that what might be needed here is a real sort of patient-led movement, and you think about that number of fatalities, and I guess I was surprised that there isn’t more outcry about that. And if there were the same sort of marches on Washington and national action days that might be a way to force along some of the change that it seems like if we let it occur naturally, has been pretty slow to evolve.

Ilana Yurkiewicz: Well I think one of the key questions involved in what you’re talking about is, is what is the root cause of all these errors? So, you know it’s easy to be upset about it, and people should be upset about it, and to get up in arms about the fact that there are so many preventable medical errors that are occurring in hospitals across the U.S., but I mean the key question is, why? And I was hoping to highlight one aspect of why with this article, which is the medical records. And I think that’s one aspect that doesn’t make it as much into the public discourse, that a lot of patients who are leading the movements don’t know as much about, and has been under reported on.

Seth Mnookin: Right. And so, a last question then, as a patient, what steps could patients take to try and ensure that the lack of different hospitals, different care providers, being able to transfer records to each other, to make sure that, that doesn’t impede their own care or cause serious complications in their own care? Or are there steps that patients can take?

Ilana Yurkiewicz: Yeah, no I think that’s a great question, and I think it’s remembering that as a patient, you are the only clear source of continuity in your own care. So, even though you trust the system around you to store your records properly and to have all the data, trying to get that data for yourself and keep it organized and bring it to every new physician or every new health care system that you come across, really helps your providers out, and it will help you out too.

Seth Mnookin: Right. Yep, right, right. And also one thing I’ve noticed in my own case, it’s important for me to take contemporaneous notes. Because, if six months later I’m trying to tell a doctor what happened at a previous appointment, even if I think I remember it perfectly, I oftentimes find out that as is the case in no matter what situation you’re trying to recount, that memory is very fallible. And things that you’re certain about didn’t always occur the way that you think they did.

Ilana Yurkiewicz: Right.

Seth Mnookin: So, let’s end up then by finishing out Michael’s story. This obviously was an incredibly difficult and painful period. But it sounds like ultimately, you were really able to help out Michael and Leah, and their story ended on, with them getting some peace.

Ilana Yurkiewicz: Yeah. I think it was very fortunate in the end, that after everything Michael had been through, everything that was preventable I might add, he ended up going home on hospice, and it was on his own terms. And then he actually, he passed away when I was in the process of writing this piece, and it was in July of 2018, and that was also on his own terms. And all of this stuff that happened to him was not on his own terms. It was things that happened to him, and in the end, I think it was a very peaceful and comfortable ending for the entire Champion family.

Seth Mnookin: And just to make clear, none of that was related to anything that occurred during the sort of medical odyssey that you were involved in. He was ultimately able to recover from all of that, and this was just the natural progression of his life.

Ilana Yurkiewicz: That’s right. It wasn’t related. I mean, this was a year and a half later, and he just happened to get sick with something else. And you know, just to make the point that it was pretty remarkable actually how long he ended up living on hospice, because in order to qualify for hospice, the doctor had to say you have under six months to live, and he ended up living a year and a half. So, he had a lot of strength. Clearly a lot of strength and a lot of fortitude.

Seth Mnookin: Yeah. Well, Ilana thank you so much. It really is an incredible story, and it’s so rare that patients and readers get this kind of look at what doctors are going through, and this kind of intimacy with doctors’ emotions and doctors’ experiences and I think it’s a real gift to readers for us to be able to read about this and understand what people on the other side of the doctor’s office are going through. So thank you very much, and thank you for coming on the Undark Podcast and talking to us.

Ilana Yurkiewicz: Thank you so much, and thank you for the very insightful questions, Seth.

Seth Mnookin: That was Ilana Yurkiewicz, who is a doctor at Stanford University, and a longtime medical journalist, and she wrote this for Undark.

Kasha Patel: Thanks for listening everyone. We are produced by Lydia Chain, music is by the Undark team, and I’m your host, Kasha Patel. I’ll be at NASW next month, come say Hi!