Clever Firm Predicts Patients Most at Risk, Then Tries to Intervene Before They Get Sicker
The diabetic patient hit the danger zone.
Ideally, blood sugar, measured by an A1C test, rests at 5.9 or less. A 7 is elevated, according to the Diabetes Council. Over 10, and you're into the extreme danger zone, at risk of every diabetic crisis from kidney failure to blindness.
In three months of working with a case manager, Jen's blood sugar had dropped to 7.2, a much safer range.
This patient's A1C was 10. Let's call her Jen for the sake of this story. (Although the facts of her case are real, the patient's actual name wasn't released due to privacy laws.).
Jen happens to live in Pennsylvania's Lehigh Valley, home of the nonprofit Lehigh Valley Health Network, which has eight hospital campuses and various clinics and other services. This network has invested more than $1 billion in IT infrastructure and founded Populytics, a spin-off firm that tracks and analyzes patient data, and makes care suggestions based on that data.
When Jen left the doctor's office, the Populytics data machine started churning, analyzing her data compared to a wealth of information about future likely hospital visits if she did not comply with recommendations, as well as the potential positive impacts of outreach and early intervention.
About a month after Jen received the dangerous blood test results, a community outreach specialist with psychological training called her. She was on a list generated by Populytics of follow-up patients to contact.
"It's a very gentle conversation," says Cathryn Kelly, who manages a care coordination team at Populytics. "The case manager provides them understanding and support and coaching." The goal, in this case, was small behavioral changes that would actually stick, like dietary ones.
In three months of working with a case manager, Jen's blood sugar had dropped to 7.2, a much safer range. The odds of her cycling back to the hospital ER or veering into kidney failure, or worse, had dropped significantly.
While the health network is extremely localized to one area of one state, using data to inform precise medical decision-making appears to be the wave of the future, says Ann Mongovern, the associate director of Health Care Ethics at the Markkula Center for Applied Ethics at Santa Clara University in California.
"Many hospitals and hospital systems don't yet try to do this at all, which is striking given where we're at in terms of our general technical ability in this society," Mongovern says.
How It Happened
While many hospitals make money by filling beds, the Lehigh Valley Health Network, as a nonprofit, accepts many patients on Medicaid and other government insurances that don't cover some of the costs of a hospitalization. The area's population is both poorer and older than national averages, according to the U.S. Census data, meaning more people with higher medical needs that may not have the support to care for themselves. They end up in the ER, or worse, again and again.
In the early 2000s, LVHN CEO Dr. Brian Nester started wondering if his health network could develop a way to predict who is most likely to land themselves a pricey ICU stay -- and offer support before those people end up needing serious care.
Embracing data use in such specific ways also brings up issues of data security and patient safety.
"There was an early understanding, even if you go back to the (federal) balanced budget act of 1997, that we were just kicking the can down the road to having a functional financial model to deliver healthcare to everyone with a reasonable price," Nester says. "We've got a lot of people living longer without more of an investment in the healthcare trust."
Popultyics, founded in 2013, was the result of years of planning and agonizing over those population numbers and cost concerns.
"We looked at our own health plan," Nester says. Out of all the employees and dependants on the LVHN's own insurance network, "roughly 1.5 percent of our 25,000 people — under 400 people — drove $30 million of our $130 million on insurance costs -- about 25 percent."
"You don't have to boil the ocean to take cost out of the system," he says. "You just have to focus on that 1.5%."
Take Jen, the diabetic patient. High blood sugar can lead to kidney failure, which can mean weekly expensive dialysis for 20 years. Investing in the data and staff to reach patients, he says, is "pennies compared to $100 bills."
For most doctors, "there's no awareness for providers to know who they should be seeing vs. who they are seeing. There's no incentive, because the incentive is to see as many patients as you can," he says.
To change that, first the LVHN invested in the popular medical management system, Epic. Then, they negotiated with the top 18 insurance companies that cover patients in the region to allow access to their patient care data, which means they have reams of patient history to feed the analytics machine in order to make predictions about outcomes. Nester admits not every hospital could do that -- with 52 percent of the market share, LVHN had a very strong negotiating position.
Third party services take that data and churn out analytics that feeds models and care management plans. All identifying information is stripped from the data.
"We can do predictive modeling in patients," says Populytics President and CEO Gregory Kile. "We can identify care gaps. Those care gaps are noted as alerts when the patient presents at the office."
Kile uses himself as a hypothetical patient.
"I pull up Gregory Kile, and boom, I see a flag or an alert. I see he hasn't been in for his last blood test. There is a care gap there we need to complete."
"There's just so much more you can do with that information," he says, envisioning a future where follow-up for, say, knee replacement surgery and outcomes could be tracked, and either validated or changed.
Ethical Issues at the Forefront
Of course, embracing data use in such specific ways also brings up issues of security and patient safety. For example, says medical ethicist Mongovern, there are many touchpoints where breaches could occur. The public has a growing awareness of how data used to personalize their experiences, such as social media analytics, can also be monetized and sold in ways that benefit a company, but not the user. That's not to say data supporting medical decisions is a bad thing, she says, just one with potential for public distrust if not handled thoughtfully.
"You're going to need to do this to stay competitive," she says. "But there's obviously big challenges, not the least of which is patient trust."
So far, a majority of the patients targeted – 62 percent -- appear to embrace the effort.
Among the ways the LVHN uses the data is monthly reports they call registries, which include patients who have just come in contact with the health network, either through the hospital or a doctor that works with them. The community outreach team members at Populytics take the names from the list, pull their records, and start calling. So far, a majority of the patients targeted – 62 percent -- appear to embrace the effort.
Says Nester: "Most of these are vulnerable people who are thrilled to have someone care about them. So they engage, and when a person engages in their care, they take their insulin shots. It's not rocket science. The rocket science is in identifying who the people are — the delivery of care is easy."
Matt Trau, a professor of chemistry at the University of Queensland, stunned the science world back in December when the prestigious journal Nature Communications published his lab's discovery about a unique property of cancer DNA that could lead to a simple, cheap, and accurate test to detect any type of cancer in under 10 minutes.
No one believed it. I didn't believe it. I thought, "Gosh, okay, maybe it's a fluke."
Trau granted very few interviews in the wake of the news, but he recently opened up to leapsmag about the significance of this promising early research. Here is his story in his own words, as told to Editor-in-Chief Kira Peikoff.
There's been an incredible explosion of knowledge over the past 20 years, particularly since the genome was sequenced. The area of diagnostics has a tremendous amount of promise and has caught our lab's interest. If you catch cancer early, you can improve survival rates to as high as 98 percent, sometimes even now surpassing that.
My lab is interested in devices to improve the trajectory of cancer patients. So, once people get diagnosed, can we get really sophisticated information about the molecular origins of the disease, and can we measure it in real time? And then can we match that with the best treatment and monitor it in real time, too?
I think those approaches, also coupled with immunotherapy, where one dreams of monitoring the immune system simultaneously with the disease progress, will be the future.
But currently, the methodologies for cancer are still pretty old. So, for example, let's talk about biopsies in general. Liquid biopsy just means using a blood test or a urine test, rather than extracting out a piece of solid tissue. Now consider breast cancer. Still, the cutting-edge screening method is mammography or the physical interrogation for lumps. This has had a big impact in terms of early detection and awareness, but it's still primitive compared to interrogating, forensically, blood samples to look at traces of DNA.
Large machines like CAT scans, PET scans, MRIs, are very expensive and very subjective in terms of the operator. They don't look at the root causes of the cancer. Cancer is caused by changes in DNA. These can be changes in the hard drive of the DNA (the genomic changes) or changes in the apps that the DNA are running (the epigenetics and the transcriptomics).
We don't look at that now, even though we have, emerging, all of these technologies to do it, and those technologies are getting so much cheaper. I saw some statistics at a conference just a few months ago that, in the United States, less than 1 percent of cancer patients have their DNA interrogated. That's the current state-of-the-art in the modern medical system.
Professor Matt Trau, a cancer researcher at the University of Queensland in Australia.
(Courtesy)
Blood, as the highway of the body, is carrying all of this information. Cancer cells, if they are present in the body, are constantly getting turned over. When they die, they release their contents into the blood. Many of these cells end up in the urine and saliva. Having technologies that can forensically scan the highways looking for evidence of cancer is little bit like looking for explosives at the airport. That's very valuable as a security tool.
The trouble is that there are thousands of different types of cancer. Going back to breast cancer, there's at least a dozen different types, probably more, and each of them change the DNA (the hard drive of the disease) and the epigenetics (or the RAM memory). So one of the problems for diagnostics in cancer is to find something that is a signature of all cancers. That's been a really, really, really difficult problem.
Ours was a completely serendipitous discovery. What we found in the lab was this one marker that just kept coming up in all of the types of breast cancers we were studying.
No one believed it. I didn't believe it. I thought, "Gosh, okay, maybe it's a fluke, maybe it works just for breast cancer." So we went on to test it in prostate cancer, which is also many different types of diseases, and it seemed to be working in all of those. We then tested it further in lymphoma. Again, many different types of lymphoma. It worked across all of those. We tested it in gastrointestinal cancer. Again, many different types, and still, it worked, but we were skeptical.
Then we looked at cell lines, which are cells that have come from previous cancer patients, that we grow in the lab, but are used as model experimental systems. We have many of those cell lines, both ones that are cancerous, and ones that are healthy. It was quite remarkable that the marker worked in all of the cancer cell lines and didn't work in the healthy cell lines.
What could possibly be going on?
Well, imagine DNA as a piece of string, that's your hard drive. Epigenetics is like the beads that you put on that string. Those beads you can take on and off as you wish and they control which apps are run, meaning which genetic programs the cell runs. We hypothesized that for cancer, those beads cluster together, rather than being randomly distributed across the string.
Ultimately, I see this as something that would be like a pregnancy test you could take at your doctor's office.
The implications of this are profound. It means that DNA from cancer folds in water into three-dimensional structures that are very different from healthy cells' DNA. It's quite literally the needle in a haystack. Because when you do a liquid biopsy for early detection of cancer, most of the DNA from blood contains a vast abundance of healthy DNA. And that's not of interest. What's of interest is to find the cancerous DNA. That's there only in trace.
Once we figured out what was going on, we could easily set up a system to detect the trace cancerous DNA. It binds to gold nanoparticles in water and changes color. The test takes 10 minutes, and you can detect it by eye. Red indicates cancer and blue doesn't.
We're very, very excited about where we go from here. We're starting to test the test on a greater number of cancers, in thousands of patient samples. We're looking to the scientific community to engage with us, and we're getting a really good response from groups around the world who are supplying more samples to us so we can test this more broadly.
We also are very interested in testing how early can we go with this test. Can we detect cancer through a simple blood test even before there are any symptoms whatsoever? If so, we might be able to convert a cancer diagnosis to something almost as good as a vaccine.
Of course, we have to watch what are called false positives. We don't want to be detecting people as positives when they don't have cancer, and so the technology needs to improve there. We see this version as the iPhone 1. We're interested in the iPhone 2, 3, 4, getting better and better.
Ultimately, I see this as something that would be like a pregnancy test you could take at your doctor's office. If it came back positive, your doctor could say, "Look, there's some news here, but actually, it's not bad news, it's good news. We've caught this so early that we will be able to manage this, and this won't be a problem for you."
If this were to be in routine use in the medical system, countless lives could be saved. Cancer is now becoming one of the biggest killers in the world. We're talking millions upon millions upon millions of people who are affected. This really motivates our work. We might make a difference there.
Kira Peikoff was the editor-in-chief of Leaps.org from 2017 to 2021. As a journalist, her work has appeared in The New York Times, Newsweek, Nautilus, Popular Mechanics, The New York Academy of Sciences, and other outlets. She is also the author of four suspense novels that explore controversial issues arising from scientific innovation: Living Proof, No Time to Die, Die Again Tomorrow, and Mother Knows Best. Peikoff holds a B.A. in Journalism from New York University and an M.S. in Bioethics from Columbia University. She lives in New Jersey with her husband and two young sons. Follow her on Twitter @KiraPeikoff.
Ethan Lindenberger, the Ohio teenager who sought out vaccinations after he was denied them as a child, recently testified before Congress about why his parents became anti-vaxxers. The trouble, he believes, stems from the pervasiveness of misinformation online.
There is evidence that 'educating' people with facts about the benefits of vaccination may not be effective.
"For my mother, her love and affection and care as a parent was used to push an agenda to create a false distress," he told the Senate Committee. His mother read posts on social media saying vaccines are dangerous, and that was enough to persuade her against them.
His story is an example of how widespread and harmful the current discourse on vaccinations is—and more importantly—how traditional strategies to convince people about the merits of vaccination have largely failed.
As responsible members of society, all of us have implicitly signed on to what ethicists call the "Social Contract" -- we agree to abide by certain moral and political rules of behavior. This is what our societal values, norms, and often governments are based upon. However, with the unprecedented rise of social media, alternative facts, and fake news, it is evident that our understanding—and application—of the social contract must also evolve.
Nowhere is this breakdown of societal norms more visible than in the failure to contain the spread of vaccine-preventable diseases like measles. What started off as unexplained episodes in New York City last October, mostly in communities that are under-vaccinated, has exploded into a national epidemic: 880 cases of measles across 24 states in 2019, according to the CDC (as of May 17, 2019). In fact, the Unites States is only eight months away from losing its "measles free" status, joining Venezuela as the second country out of North and South America with that status.
The U.S. is not the only country facing this growing problem. Such constant and perilous reemergence of measles and other vaccine-preventable diseases in various parts of the world raises doubts about the efficacy of current vaccination policies. In addition to the loss of valuable life, these outbreaks lead to loss of millions of dollars in unnecessary expenditure of scarce healthcare resources. While we may be living through an age of information, we are also navigating an era whose hallmark is a massive onslaught on truth.
There is ample evidence on how these outbreaks start: low-vaccination rates. At the same time, there is evidence that 'educating' people with facts about the benefits of vaccination may not be effective. Indeed, human reasoning has a limit, and facts alone rarely change a person's opinion. In a fascinating report by researchers from the University of Pennsylvania, a small experiment revealed how "behavioral nudges" could inform policy decisions around vaccination.
In the reported experiment, the vaccination rate for employees of a company increased by 1.5 percent when they were prompted to name the date when they planned to get their flu shot. In the same experiment, when employees were prompted to name both a date and a time for their planned flu shot, vaccination rate increased by 4 percent.
A randomized trial revealed the subtle power of "announcements" – direct, brief, assertive statements by physicians that assumed parents were ready to vaccinate their children.
This experiment is a part of an emerging field of behavioral economics—a scientific undertaking that uses insights from psychology to understand human decision-making. The field was born from a humbling realization that humans probably do not possess an unlimited capacity for processing information. Work in this field could inform how we can formulate vaccination policy that is effective, conserves healthcare resources, and is applicable to current societal norms.
Take, for instance, the case of Human Papilloma Virus (HPV) that can cause several types of cancers in both men and women. Research into the quality of physician communication has repeatedly revealed how lukewarm recommendations for HPV vaccination by primary care physicians likely contributes to under-immunization of eligible adolescents and can cause confusion for parents.
A randomized trial revealed the subtle power of "announcements" – direct, brief, assertive statements by physicians that assumed parents were ready to vaccinate their children. These announcements increased vaccination rates by 5.4 percent. Lengthy, open-ended dialogues demonstrated no benefit in vaccination rates. It seems that uncertainty from the physician translates to unwillingness from a parent.
Choice architecture is another compelling concept. The premise is simple: We hardly make any of our decisions in vacuum; the environment in which these decisions are made has an influence. If health systems were designed with these insights in mind, people would be more likely to make better choices—without being forced.
This theory, proposed by Richard Thaler, who won the 2017 Nobel Prize in Economics, was put to the test by physicians at the University of Pennsylvania. In their study, flu vaccination rates at primary care practices increased by 9.5 percent all because the staff implemented "active choice intervention" in their electronic health records—a prompt that nudged doctors and nurses to ask patients if they'd gotten the vaccine yet. This study illustrated how an intervention as simple as a reminder can save lives.
To be sure, some bioethicists do worry about implementing these policies. Are behavioral nudges akin to increased scrutiny or a burden for the disadvantaged? For example, would incentives to quit smoking unfairly target the poor, who are more likely to receive criticism for bad choices?
The measles outbreak is a sober reminder of how devastating it can be when the social contract breaks down.
While this is a valid concern, behavioral economics offers one of the only ethical solutions to increasing vaccination rates by addressing the most critical—and often legal—challenge to universal vaccinations: mandates. Choice architecture and other interventions encourage and inform a choice, allowing an individual to retain his or her right to refuse unwanted treatment. This distinction is especially important, as evidence suggests that people who refuse vaccinations often do so as a result of cognitive biases – systematic errors in thinking resulting from emotional attachment or a lack of information.
For instance, people are prone to "confirmation bias," or a tendency to selectively believe in information that confirms their preexisting theories, rather than the available evidence. At the same time, people do not like mandates. In such situations, choice architecture provides a useful option: people are nudged to make the right choice via the design of health delivery systems, without needing policies that rely on force.
The measles outbreak is a sober reminder of how devastating it can be when the social contract breaks down and people fall prey to misinformation. But all is not lost. As we fight a larger societal battle against alternative facts, we now have another option in the trenches to subtly encourage people to make better choices.
Using insights from research in decision-making, we can all contribute meaningfully in controversial conversations with family, friends, neighbors, colleagues, and our representatives — and push for policies that protect those we care about. A little more than a hundred years ago, thousands of lives were routinely lost to preventive illnesses. We've come too far to let ignorance destroy us now.