Show 1461: How Patients Are Using Technology to Heal Healthcare

Medicine has changed enormously over the last several decades. As with other parts of society, digital technology has disrupted previous practices. Clinicians can now care for patients at home, monitoring them with sophisticated sensors for oxygen saturation, heart rhythm, blood pressure and much more. Even more significant, patients now have greater access to medical knowledge as well as to the state of their own bodies, measured through wearable tools such as smart watches or continuous glucose monitors. With the internet, they can connect with patient groups that offer valuable information as well as emotional support. Find out how patients are using technology to heal healthcare.

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When we spoke with Dr. Marschall Runge, we reminisced about the changes in medical care that have taken place since the time of his grandfather, a general practitioner. There is quite a contrast. While his grandfather made house calls, few doctors today would do so. However, some very modern medical centers now offer patients the option to recover at home from a major procedure. Dr. Runge describes his personal experience with at-home recovery following hip replacement surgery. The clinical staff was able to keep close tabs on his progress with the help of a variety of monitors, and a nurse was available to answer questions or provide advice until he was back on his feet. There are distinct advantages to the patient to be able to recover at home; among other things, he could sleep much better in his own bed.

What other digital technology will healthcare employ? One possibility is using AI conversational agents to assist with differential diagnosis. Some devices can detect depression based on a patient’s speech. Others can pick up heart rate variability, an important parameter of heart health. Dr. Runge does not expect that robots will replace doctors. They could be very helpful in certain situations, though.

We turn next to Susannah Fox, author of Rebel Health. She has been studying how patients are using technology to improve their health for decades. We first met Susannah through our mutual friend, Dr. Tom Ferguson. He was a staunch advocate for self-care and excited about the prospects for the internet. (His white paper, “e-Patients: How they can help us heal health care” is a classic. Look for it at the website of the Society for Participatory Medicine.) Not only do patients everywhere now have access to PubMed (the National Library of Congress), they can also connect with each other. Peer-to-peer advice and care is a topic Susannah knows well.

In some cases, patients have conducted research that is focused on the questions crucial to their lives; these are not always the same things that researchers want to study. One shining example of patient-initiated research is a paper in Nature on long COVID by the Patient-Led Research Collaborative (Nature Reviews Microbiology, April 17, 2023; initial publication Jan. 13, 2023).  This paper has been downloaded 2 million times, illustrating the value of patient-led research.

In addition to this outstanding example, some journals have adopted a policy of disclosing patient input into the research. Although very few studies report patient input, setting the expectation that they might make valuable contributions could help shape the perception of who ought to be involved in developing research protocols.

PubMed is an impressive collection of published medical information because it is an online index of important research publications. Some of the journal articles could be difficult for patients to understand, however, as researchers are writing for other scientists and may often use specialized or complicated language. Now people are using LLMs like ChatGPT or Claude to summarize the articles in language they can understand. Indeed, these AI agents can translate articles into a different language if necessary for comprehension. With this technology, patients are better able to determine if their diagnosis makes sense and to search for potential interventions that might be useful in their specific case.

Despite these changes, there are still many medical systems that resist potential input from patients. Power is not evenly distributed, and Susannah Fox has found that many people are furious about it.

We asked her to describe the schematic from Rebel Health that epitomizes where most attention is needed. It has two axes, one running from visible to invisible and the other from needs not met to needs met. A lot of medical care is devoted to the upper right quadrant–visible needs that are being met. The lower left quadrant, where the needs seem invisible and are not being met, is where patient frustration comes to a head. Rare diseases often fall into this category. Researchers and physicians need to know about patients’ lived experiences so that invisible needs not being met can be addressed.

One of the ways in which AI is contributing to important changes in medical care is the search for medicines that can treat inadequately treated diseases. Susannah Fox praised the efforts of Dr. David Fajgenbaum, whose EveryCure organization is using AI to uncover how old drugs can be used to treat cancers, rare diseases, immunologic disorders and other problems that don’t yet have effective standards of care.

Other patients who are showing the way to using AI for improving patient experience and patient health are Dave deBronkart (epatient Dave) and Hugo Campos. They have found that using an agent like ChatGPT in a dialog can help them move forward a lot more quickly in solving patient problems.

Around the turn of the 21st century, Joe and Dr. Tom Ferguson had a heated ongoing disagreement about the concept of online prescribing. Tom was enthusiastic and Joe was skeptical, to say the least. Susannah Fox weighs in on this argument supporting Tom’s side at this point. With wearables like smart watches or continuous glucose monitors to track important markers of health, we see some patients using technology to follow up on how well their prescriptions are working, regardless of whether they were prescribed in the office or online.

We also asked Susannah to provide advice for how we can successfully advocate for our own health. Her most important nugget: ask good questions! Clinicians appreciate good questions that help them re-think the patient’s situation or explain it more clearly.

Marschall S. Runge, M.D., Ph.D., is the former executive vice president for Medical Affairs at the University of Michigan, dean of the Medical School, and CEO of Michigan Medicine. During his tenure in these leadership roles, Dr. Runge implemented transformative change and positioned Michigan Medicine and the Medical School internationally for continued success. He earned his doctorate in molecular biology at Vanderbilt University and his medical degree from Johns Hopkins School of Medicine, where he also completed a residency in internal medicine. He was a cardiology fellow at the Massachusetts General Hospital. Dr. Runge is the author of The Great Healthcare Disruption: Big Tech, Bold Policy, and the Future of American Medicine

Susannah Fox helps people navigate health and technology. She served as Chief Technology Officer for the US Department of Health and Human Services, where she led an open data and innovation lab. Prior to that, she was the entrepreneur-in-residence at the Robert Wood Johnson Foundation and directed the health portfolio at the Pew Research Center’s Internet Project. She is the author of Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care.

Her website is https://susannahfox.com/

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