Michael Anne Kyle had just started her Ph.D. in health policy and management at 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 not been to the doctor so long in their lives. She would text Kyle, who is also an ICU nurse, with complaints. “I missed a whole day of work for a ten-minute visit,” they said, or “I spent all this time waiting. Is this normal?” Once he started asking, it seemed everyone had a story.

In 2022, the US spent over $4 trillion on health care, about 17% of its GDP. In 1960this fraction was 5%; of 2032it is expected to increase to about 20%.

More insidious than these financial burdens on patients are the costs without an obvious price tag—phone calls and faxes, forms and coordination between providers, all of which take time and can be difficult to navigate and cause patients to delay or forgo care altogether. . And while the administrative complexity of health care is familiar to many, it is not well studied. That’s partly because it can be difficult to document, and partly, Kyle says, because people often accept it as a hassle that will eventually work itself out.

Kyle, who was recently named a STATE Wunderkindspent his Ph.D. and a postdoctoral research fellowship that systematically documents how the non-financial administrative burdens of health care affect patients. She continues to bring them to light as and university assistant at the Perelman School of Medicine at the University of Pennsylvania.

“I think it matters a lot 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 systemic failures

When Kyle started working as a nurse in 2006, he quickly noticed systemic failures in the health care system. There were still “never events”—errors that should never happen, such as surgery on the wrong part of the body, or a patient developing bedsores or a catheter infection in the hospital. There were payment structures they aimed to reduce these problems but introduced change through doctors, even though nurses were often more responsible for avoiding potential ‘never events’.

And then there were the patients for whom help came too late.

“A lot of the care you do (in a hospital) is for people who had problems at home that should have been dealt with days, months, weeks and years ago,” Kyle said.

Patients with advanced heart failure could be visiting the doctor for the first time in 20 years, so sick they couldn’t leave the hospital without a new heart. Others had rheumatic heart disease, scarring of the heart from childhood illnesses that can be treated with antibiotics or prevented with vaccines.

Kyle wondered if he could reach patients faster and be part of a more systemic change. 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 bringing her health care complaints, Kyle scoured the literature, trying to find research on how administrative burdens were preventing patients from receiving the best care. When she didn’t find much—in part because standard administrative data sets like Medicare claims don’t capture these statistics—she began designing a survey that would document the administrative burdens and lay the groundwork for Interviews with patients experiencing them.

“I think everyone understands that patients are frustrated with the health care system,” said Michael Chernew, an economist at Harvard Medical School. “I don’t think many people want to take the time and effort to study it like Michael Anne did.”

Along 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 Health reform monitoring survey. About a quarter of respondents have delayed or foregone care as a result of 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 burden affects patients about as often as high financial costs.

Their paperpublished in 2021, struck a nerve. A journalist wrote a op-ed for Teen Vogue about how she and others with chronic illnesses have spent countless hours navigating such issues. “I knew from social media that I was not alone in my experience, but Kyle and Frakt’s study drove home the insidiousness of the problem,” she wrote. “And unlike a Twitter thread I wrote in frustration, the results of their study were quantifiable and academic.”

For Nancy Keating, a professor of health care policy and medicine at Harvard and a primary care physician at Brigham and Women’s Hospital, the survey put a number to 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 a treatment or a medication because they couldn’t schedule it,” he said. she said.

Medical professionals also face these complexities. Recently, Keating personally spent 30 minutes begging a phone tree of people to explain why her patient’s prescription was not approved.

“My heart sinks whenever I have to make one of those phone calls, because I know it’s not going to be a five-minute conversation,” she said. As a part-time doctor, Keating said he has time to make those phone calls; this is often not feasible for other doctors who spend all day visiting patients.

“There are lots and lots of different examples, but it shouldn’t be that hard, both for patients and for doctors,” she said.

Kyle, who has seen Keating’s pager go off at appointments, knows how hard Keating works to keep patients with complex medical conditions out of the hospital.

“Having someone who cares is kind of the key in a lot of these things,” Kyle said. “It’s great if you have that, but a system can’t be set up based on someone’s good heart.”

The costs of delayed care

After graduating in 2021, Kyle remained at Harvard to complete a postdoctoral fellowship studying the burdens of cancer patients, who often have particularly frequent contacts with the health care system. With Keating, he turned his attention to some of the strategies insurance companies use to manage health care costs, such as prior authorizations. Basically, prior authorizations—wherein insurance companies require healthcare providers to get approval before proceeding with a treatment plan—prevent unnecessary and expensive costs. In practice, however, they can lead to delayed careand Kyle wanted to quantify their impact.

Using Medicare claims data, she compared prescription refills from patients taking the same oral cancer drug before and after the introduction of a new prior authorization policy—and again finder quantifiable delays. Requiring prior authorization increased the odds of a person stopping their medication within the next 120 days by seven times and delayed their next prescription refill by almost 10 days. This type of delay could cause stress and, in some cases, even lead to disease progression, although Kyle and Keating’s study did not examine these effects.

Now at UPenn, Kyle aims to determine exactly how administrative tasks influence care—whether it causes people to miss appointments or go to the emergency room more, for example—by linking survey data and medical records. While there’s unlikely to be a single fix, Kyle says he believes small changes will make a difference. Standardization of healthcare forms could help, as could a more nuanced prior authorization policy that prevents new policies on established treatments or drugs with a track record of effectiveness.

Documenting research and its impact might not seem flashy or essential to some, Kyle says, but to her it feels like the last mile of health care, a key part of making it easier to be a patient.

“In the health care system, we talk about how we want to help people, and when you go to use the system, it’s not helpful,” she said. The goal, she said, should be “to use people’s time more respectfully and make the system feel easier to use.”