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."
[Editor's Note: This is the final video of a five-part series titled "The Future Is Now: The Revolutionary Power of Stem Cell Research." Produced in partnership with the Regenerative Medicine Foundation, and filmed at the annual 2019 World Stem Cell Summit, this series illustrates how stem cell research will profoundly impact human life.]
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.
The Troubling Reason I Obsessively Researched My Pregnancy
At the end of my second trimester of pregnancy, I answered a call from an unknown number.
To be pregnant is to exist on a never-ending receiving line of advice, whether we want it or not.
"I know your due date is approaching," said a stranger at the other end of the line, completely freaking me out. She identified herself as being from Natera, a company that my doctor had used for genetic testing I had consented to months ago.
"Excuse me?" I said.
"Have you considered cord-blood banking?" she said.
"No, I'm not doing that," I said. I had read enough about cord-blood banking, the process of saving stem cell-containing blood from your baby's umbilical cord, to understand that my family was in the vast majority of those that would with extremely high likelihood derive no medical benefit from it. Of course, in the societally sanctioned spending spree that accompanies new parenthood, plenty of companies are happy to charge anyone hundreds if not thousands of dollars plus annual storage fees to collect and manage your cord blood.
"Why not? Have you considered all the bene—"
"I'm not doing it and I don't want to explain my decision," I said before hanging up. I would later learn I neglected to check a miniscule box on my testing consent forms at the doctor to opt out of solicitations. Still, I was angry that I was being telemarketed unnecessary and costly medical services by someone who had been trained to immediately call my judgment into question. I was annoyed that my doctor's office would allow such intrusions at all. When I asked my OB about it at my next visit, she told me there's no way Natera would have gotten my information from them. Apparently even she didn't realize what was on those forms.
The incident with Natera did nothing to heighten my trust of the medical establishment during my pregnancy. I was hardly alone. Almost every mom I knew had expressed a similar sentiment.
"I don't trust doctors," read the text of a loved one when I told her I would probably get an epidural after my doctor recommended getting one because, she said, it can help relax the pelvic muscles during labor. But this friend, a highly educated woman who had had done her research and had two unmedicated births, believed firmly otherwise. "Look it up," she said. Thus commenced more of the furious Googling I found myself doing multiple times a day since deciding I wanted to become pregnant.
To be pregnant is to exist on a never-ending receiving line of advice, whether we want it or not. Information presents to us from Google's never-out-of-reach search bar, friends and family eager to use our pregnancies as an excuse to recall their own, and the doctor's office, where the wisdom of medical professionals neatly comingles with brochures and free samples from myriad companies that would really, really like our business as new moms. Separating the "good" advice from the rest is a Herculean task that many pregnant women manage only with vigorous fact-finding missions of their own.
The medical community in America is poorly equipped to help women navigate the enormous pressures that come with birth and transitioning to motherhood.
Doing my research during pregnancy felt like a defense against the scary unknowns, overabundance of opinions, and disturbing marketing schemes that come with entering parenthood. The medical community in America is poorly equipped to help women navigate the enormous emotional and societal pressures that come with birth and transitioning to motherhood. Too much of what pregnant women experience at the doctor has to do with dated ideas about our care, mandated by tradition or a fear of being sued rather than medical necessity. These practices, like weigh-ins at every appointment or medically unnecessary C-sections (which are estimated to account, horrifically, for almost 50 percent of all C-sections performed in the U.S.), only heighten anxiety.
Meanwhile, things that might alleviate stress – like having thorough discussions about the kinds of interventions we might be asked to accept at the hospital during labor and delivery – are left to outside educators and doulas that insurance plans typically don't cover. The net effect isn't better health outcomes for mom and baby, but rather a normalized sense of distrust many American women feel toward their OBGYNs, and the burden of going to every appointment and the delivery room on the defensive. Instead of being wed to dated medical practices and tangled in America's new motherhood industrial complex, shouldn't our doctors, of all people, be our biggest advocates?
As soon as I found out I was pregnant, I devoured Expecting Better, by Emily Oster, an economist who embarked on her own fact-finding mission during her first pregnancy, predicated on the belief that the advice OBGYNs have been giving pregnant women for decades is out of date and unnecessarily restrictive. The book includes controversial stances, like that having small amounts of alcohol while pregnant is OK. (More recent research has called this view into question.) Oster writes that for the vast majority of pregnant women, it's perfectly fine to lie on your back, do sit-ups, and eat Brie — all things I was relieved to learn I wouldn't have to give up for nine months, despite the traditional advice, which my doctor also gave to me.
Oster recommends hiring a doula, based both on research and personal experience. It's a worthwhile investment for those who can afford it: according to one study, 20.4 percent of laboring women with doulas had C-sections compared with 34.2 percent of women without them. A doula can do many things for a pregnant client, including helping her write a birth plan, massaging her back in labor, and cheering her on, which is especially useful for women who plan to labor without pain medication. Use of doulas is on the rise; according to DONA International, the world's largest and oldest doula association, the number of doulas who have been certified to date is over 12,000, up from 2,000 in 2002.
But the most significant role a doula plays is that of patient advocate in the hospital. This is a profound commentary on the way the medical establishment handles childbirth, a medical event that 86 percent of women aged 40 to 44 had gone through as of 2016. Recognizing the maternal mortality crisis in the U.S., where women are far more likely to die as a result of childbirth than anywhere else in the developed world and black women are three times more likely to die in childbirth than white women, a few states now allow Medicaid to cover doulas. Can you imagine feeling the need to hire an independent non-medical care provider to help you run interference with your doctors and nurses for something like an appendectomy?
I wouldn't have been aware of all the imminent interventions during my labor if my doula hadn't told me about them. Things happen fast in the hospital and doctors and nurses may rush patients to consent before proceeding with things like breaking their water or hooking them up to an IV of Pitocin. Only because my husband and I had spent six hours in birth class — a suggestion by my doula — did I realize that I was empowered to say "no" to such procedures.
Expecting more trustworthy advice to come from my doctor than books or Google or even a doula hardly seems unreasonable.
Of course, we all feel immense pressure to become good parents, and questioning conventional medical wisdom is a natural response to that pressure. "Looking around at the world and saying, who am I as a parent? What is important to me? Who are the wise people? What do I think wisdom is? What is a good decision? If you're a certain type of introspective person, if you're really asking those questions, that's going to include like taking a second look at things that doctors, for example, say," says Koyuki Smith, a doula and birth educator.
Expecting more trustworthy advice to come from my doctor than books or Google or even a doula hardly seems unreasonable. Yet my doctor's office seemed more concerned with checking off a list of boxes rather than providing me with personalized care that might have relieved my understandable anxiety about my first birth. When I still hadn't gone into labor around the time of my due date, my doctor encouraged me to be induced because my baby appeared to be large. I declined but scheduled an induction to "hold my spot" around the 42-week mark.
When I asked what medication would be used for an induction if I had one and she said Cytotec, I told her I had read that drug could cause serious complications, but she dismissed my concerns after I told her they stemmed from a book I read on natural childbirth. The FDA's page on Cytotec isn't exactly reassuring.
The nurse who took me in triage after I went into labor a week past my due date practically scolded me for waiting to go into labor naturally instead of opting for induction sooner. My doula told her while I was struggling to speak through labor pains to get off my case about it. I hadn't even become a mom and I was already doing so many things "wrong." Because I had done my own reading, I felt confident that my choices weren't harming my baby or me.
Becoming a mom would be less daunting if the medical community found a way to help women navigate the pressures of motherhood instead of adding to them. "Our culture at large doesn't support women enough in the complicated emotions that are a part of this process," said Alexandra Saks, a reproductive psychologist and author of What No One Tells You: A Guide to Your Emotions From Pregnancy to Motherhood. "I hope that every practitioner that works with women around reproductive health prioritizes her emotions around her experience."
For many of us, that will mean doctors who help us understand the pros and cons of conventional advice, don't use their offices as marketing channels, and don't pressure women into medically unnecessary inductions. Moms should also receive more attention after delivery both in the hospital and after they get home; a single, quick postpartum visit at six weeks is not an adequate way to care for women recovering from the trauma of childbirth, nor is it an adequate way to ensure women are emotionally supported during the transition. While several people interrogated me about my mental health at the hospital and my doctor's office just before and after birth, if I had been concerned about postpartum depression, I can't imagine feeling comfortable enough in those moments to tell strangers filling out obligatory worksheets.
It also means figuring out how to talk to patients who are prone to Googling their pregnancies with gusto every single day. It would be impossible for many women to shun independent research during pregnancy altogether. But it would also be nice if our doctors didn't add to our impulse to do it.