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Michael Anne Kyle had just started her Ph.D. in health care policy and management from Harvard Business School when her friends started complaining about the health care system.
Many of them were having children for the first time and had never been to the doctor so often in their lives. They texted Kyle, who is also an ICU nurse, with complaints. “I missed an entire day of work for a ten-minute visit,” they would say, or, “I’ve been on hold all that time. Is this normal?” Once she started asking, it seemed like everyone had a story.
In 2022 the USA spent over $4 trillion in health care, about 17% of GDP. In 1960this fraction was 5%; Through 2032This is predicted to rise to around 20%.
More insidious than these financial burdens on patients are the costs without a clear price tag – phone calls and faxes, forms and coordination between providers, all of which take time and can be challenging to navigate, and can lead patients to delay or forego care altogether. . And while the administrative complexity of healthcare is well known to many, it has not been well studied. That’s partly because it can be a challenge to document, and partly, Kyle says, because people often accept it as a hassle that will eventually resolve itself.
Kyle, who was recently named a STAT Wunderkind, earned her Ph.D. and a postdoctoral research fellowship that systematically documents how the non-financial administrative burdens of healthcare impact patients. She continues to expose them as one assistant professor at the University of Pennsylvania Perelman School of Medicine.
“I think it is very important for patients. I think it affects them more than we realize,” Kyle said. “And I think there’s an opportunity for us to do better.”
The costs of system failure
When Kyle first started working as a nurse in 2006, she quickly noticed systemic deficiencies in the healthcare system. There were still ‘never events’ – mistakes that should never happen, like surgery on the wrong part of the body, or a patient developing bedsores, or a catheter infection in the hospital. There were payment structures aimed at reducing these problems, but they introduced change through physicians, even though nurses were often more responsible for avoiding potential ‘never events’.
And then there were the patients for whom help came too late.
“So much of the care you do [in a hospital] is for people who had problems at home that should have been resolved days, months, weeks and years ago,” said Kyle.
Patients with advanced heart failure could visit the doctor for the first time in two decades, so sick they couldn’t leave the hospital without a new heart. Others had rheumatic heart disease, scarring of the heart caused by childhood illnesses that are treatable with antibiotics or preventable with vaccines.
Kyle wondered if she could reach patients sooner and be part of more systemic changes. After five years working in community health organizations to help people enroll in programs like Medicaid, she began studying health policy.
When her friends started presenting her with their health care complaints, Kyle looked through the literature, looking for research on how administrative burdens were keeping patients from getting the best care. When she didn’t find much — in part because standard administrative data sets like Medicare claims don’t include these statistics — she began designing a study that would both document the administrative burden and lay the groundwork for job interviews with the patients who experience them.
“I think everyone understands that patients are frustrated with the health care system,” said Michael Chernew, an economist at Harvard Medical School. “I just don’t think many people want to take the time and effort to study it like Michael Anne did.”
Together with Austin Frakt, a health economist with appointments at Harvard, Boston University and the Department of Veterans Affairs, Kyle surveyed 4,000 insured patients as part of the Health Reform Monitoring Survey. About a quarter of respondents had delayed or forgone care due to administrative tasks such as scheduling appointments and resolving billing issues. (This burden fell disproportionately on people with disabilities.) Kyle and Frakt’s findings showed that administrative burdens weighed heavily on patients about as often as high financial costs.
Their paperpublished in 2021, struck a chord. A journalist wrote one op-ed for TeenVogue about how she and others with chronic illnesses spent countless hours navigating such issues. “I knew through social media that I was not alone in my experience, but Kyle and Frakt’s research made clear the insidiousness of the issue,” she wrote. “And, unlike a Twitter thread I wrote out of frustration, the findings in their study were quantifiable and academic.”
For Nancy Keating, a professor of health care policy and medicine at Harvard and a family physician at Brigham and Women’s Hospital, the study put a number on a trend she sees in her own practice.
“I think a lot of people just give up, which is also a problem because sometimes you don’t even realize that a patient hasn’t started treatment or medication because they couldn’t plan it,” she said.
Medical professionals also experience this complexity. Recently, Keating personally spent 30 minutes begging a phone tree of people to explain why her patient’s prescription wasn’t approved.
“My heart sinks when I have to make a call like that because I know it’s not going to be a five-minute conversation,” she said. As a part-time physician, Keating said she has time to make those calls; that is often not feasible for other doctors who see patients all day.
“There are a lot of different examples, but it shouldn’t be that difficult, both for the patients and for the doctors,” she said.
Kyle, who has seen Keating’s pager go off during meetings, knows how hard Keating works to keep patients with complex medical situations out of the hospital.
“Having one person who cares about you is kind of the linchpin in a lot of these things,” Kyle said. “It’s nice if you have that, but you can’t set up a system based on someone’s good heart.”
The costs of deferred care
After graduating in 2021, Kyle remained at Harvard to conduct postdoctoral research on the burdens of cancer patients, who often have particularly frequent contact with the healthcare system. With Keating, she turned her attention to some of the strategies insurance companies use to control health care costs, such as prior authorization. In principle, prior authorizations – where insurance companies require healthcare providers to obtain approval before proceeding with a treatment plan – prevent unnecessary, expensive costs. In practice, however, they can lead to this deferred careand Kyle wanted to quantify their impact.
Using Medicare claims data, she compared prescription prescriptions of patients taking the same oral anticancer drug before and after a new prior authorization policy was introduced—and again found quantifiable delays. Requiring prior authorization both increased the odds sevenfold that someone would stop taking their medication within the next 120 days and delayed the next dispensing of their prescription by almost ten days. That kind of delay can cause stress and, in some cases, possibly even lead to disease progression, although Kyle and Keating’s study did not examine these effects.
Now Kyle at UPenn wants to determine exactly how administrative burdens impact care – if they cause people to miss appointments or make more frequent trips to the emergency room – by linking research data and medical records. While it’s unlikely there will be a single solution, Kyle says she thinks small changes will make a difference. Standardizing healthcare modalities could help, as could a more nuanced prior authorization policy that prevents the introduction of new policies on established treatments, or on medicines with a track record of efficacy.
Exploring paperwork and its impact may not seem glamorous or essential to some, Kyle says, but to her it feels like the last mile of healthcare, an important part of making it easier to be a patient.
“In health care we talk about how we want to help people, and then when you start using the system, it doesn’t help,” she said. The goal, she said, should be to “use people’s time more respectfully and make the system more user-friendly.”
Allessandra Di Corato is a freelance science writer whose work has appeared in STAT, KQED, Undark Magazine and other publications. She has a Ph.D. in materials science and is a full-time science writer at the Broad Institute of MIT and Harvard.