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How One Doctor Helps Patients’ Voices Be Heard

Kristin Rising, MD, thought she was doing things the right way.

Early in her emergency medicine career, Rising would tell patients who lacked a clear diagnosis at the time of discharge that she had a lot of good news and a little bit of bad news—the good being that testing revealed no serious conditions, and the bad being that she didn’t know what caused their symptoms.

“It turns out that, from the patient perspective, this was often the worst news possible,” she says. “Diagnostic uncertainty can be intolerable for some people experiencing symptoms. A woman in one of my studies said she would rather be diagnosed with cancer than get discharged without an explanation. While this seemed unbelievable to me at the time, it is something that I have come to understand much better as it has been expressed by many others in different ways since.”

Rising, an associate professor of emergency medicine and director of acute care transitions, examines the drivers of recurrent emergency department visits and has found that uncertainty tops the list. Frustrated by those in the healthcare system who approach patient recidivism with a “shame on you” attitude and deem their returns inappropriate, she started asking patients what kind of support they needed to stay healthy outside of the hospital.

“I hate that word, ‘inappropriate,’” she says. “Because it’s entirely relative to the perspective from which it is assessed. Any patient who comes back to the emergency department has made a decision that is appropriate for them considering their needs and resources. When a patient returns to the emergency department after a recent visit, I see it as a flag that the system is failing the patient. We need to figure out how we can fix the system to better assist people in having a safer transition home from their first ED visit, or in never needing to visit the ED in the first place.”

As Rising surveyed returning patients, the same kinds of questions surfaced again and again, particularly among those who were discharged with a symptom-based diagnosis (such as “chest pain” or “abdominal pain”)—one out of every three ED visitors. Why aren’t my medications working? What else can I take? Is it safe for me to travel? Am I contagious? Is there a test you could have run, but didn’t? Will I still feel sick in a week? A month? A year?

“Not being able to plan and not knowing what to expect can be debilitating,” says Rising. She notes that some people report choosing the ED because they fear primary care physicians won’t have the tools to get quick enough answers: “If someone thinks they might have a brain tumor, they want immediate answers and think that the ED will have all the testing options they want.”

Since joining Jefferson in 2014, Rising—who earned her MD at the University of California San Francisco and has a master’s degree in health policy from the University of Pennsylvania—has received $5.6 million in research funding awards for which she is the principal investigator, and is currently leading or co-investigator on nine grant-funded studies. Her research focuses on the design and redesign of the care delivery system to incorporate the unique circumstances and preferences of patients and their families. Rising has served on multiple national expert panels and is on the editorial boards for two journals. Her research has been funded by the National Institutes of Health, the Patient-Centered Outcomes Research Institute, the Agency for Healthcare Research and Quality, the Pennsylvania Department of Health, and multiple foundations.

One project funded by the Agency for Healthcare Research and Quality involves developing a checklist for emergency medicine residents to use with patients who have diagnostic uncertainty. The checklist improves communication with these individuals and helps clinicians manage their expectations and give explicit guidance for the days following discharge. Through prior funded work, Rising also developed the Uncertainty Scale (U-Scale), a tool to help quantify individual patient needs related to experiencing symptoms. The U-Scale helps identify different types of patient uncertainty, such as “symptom management” versus “financial implications,” which may benefit from different types of interventions.

Although Rising initially resisted focusing her research on a specific disease, she has increasingly focused on patients with Type 2 diabetes, a condition she says exemplifies the disconnect between medical goals and patient goals. The year after she finished her undergraduate degree, she worked as a research assistant at San Francisco General Hospital and met a patient with poorly controlled diabetes and a chronic leg wound that just wouldn’t heal. While interviewing the patient to explore his barriers to staying healthy, he explained to Rising that the clinicians kept insisting that he stay off his leg and eat more nutritious meals—but he was homeless and spent his days searching for safe places to sleep and whatever food he could get. The man responded that he could not afford to rest, or to be picky. That encounter sticks with Rising to this day, nearly 20 years later.

“How could anyone argue with such a real and honest response?” she laments. “We have well-established, evidence-based treatments for diabetes, but they’re not just pharmacological, and success involves active participation from patients who might not have the foundation to carry out the ideal protocol. I want to know how we can better tailor interventions for these patients to meet their personal goals and get to better medical ends.”

Rising recently began a trial to determine just that, securing her largest funding award to date—a $3.3 million grant from the National Institute of Diabetes and Digestive and Kidney Diseases supporting a comparison of two different diabetes interventions focused on addressing social determinants of health. One group of patients will receive traditional care; a second will pair that same care with 12 weeks of medically tailored meals delivered by the nutrition nonprofit MANNA; and a third will receive traditional care and MANNA meals while also participating in a telehealth-delivered nutrition education program. This study includes a cost-effectiveness analysis, with the ultimate goal of influencing policy change to cover these interventions, if shown cost effective, as routine benefits.

“We have some evidence from prior work that medically tailored meals are effective at improving outcomes for patients while also reducing costs, but it is not rigorous enough to inform widespread policy change. With this study, in which we will follow 600 patients for 12 months, I hope to show that the meals along with nutrition counseling lead to cost-effective and sustained change,” she says, adding that Aetna, Independence Blue Cross, and Health Partners Plans have all committed to considering expanding their benefits coverage based on the findings. “Patients have told us they don’t know enough about nutrition—that the healthcare system is good at telling them what not to eat, but not at telling them what to eat. They need to get a sense of how much food is OK and what a balanced diet looks like, and we can teach them that.”

Making sure patients’ voices are heard is among Rising’s greatest passions, but it’s not quite the greatest. That honor goes to her family: husband Louis and 2-and-a-half-year-old twins Stella and Cora, whose wake-ups and bedtimes are her favorite times of day. A musician since childhood—she played the violin, flute, and organ—she also started taking guitar lessons last winter in order to carve out some occasional “me time.”

Her daughters routinely sleep through the night, but Rising still lies awake sometimes, ruminating about her work—and how she can use it to improve healthcare delivery and change people’s lives. Her passion has been recognized in many ways, including with Jefferson’s Outstanding Research in Telehealth Award, which she has received three times, as well as the Marjorie A. Bowman, MD ’76, Early Career Investigator Award for Primary Care Research. The Pennsylvania Medical Society named her a Top Physician Under 40 in 2017.

Rising’s vision is to establish a center to promote further development of her research portfolio through a multidisciplinary approach. The center’s goal would be to develop the rigorous evidence needed to build a health system truly capable of fulfilling each individual’s needs, including a focus on addressing the social determinants of health as part of routine healthcare. She would love to find an investor (or two) to launch the initial phases of this center, which she believes can be transformative to the way we approach healthcare delivery.

“What it comes down to is that my projects are all focused on patient engagement to inform a more patient-centered delivery system and address the social determinants of health,” she says. “We continually develop new, fancy medicines and push more medicine, more medicine, more medicine—but if we could just listen to patients and get to the foundation of what they need to be healthy on a daily basis, we would accomplish so much more.”