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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Transcript of Show 1461:

A transcript of this show was created using automated speech-to-text software (AI-powered transcription), then carefully reviewed and edited for clarity. While we’ve done our best to ensure both readability and accuracy, please keep in mind that some mistakes may remain. If you have any questions regarding the content of this show, we encourage you to review the original audio recording. This transcript is copyrighted material, all rights reserved. No part of this transcript may be reproduced, distributed, or transmitted in any form without prior written permission.

Joe

00:00-00:01

I’m Joe Graedon.

Terry

00:01-00:05

And I’m Terry Graedon. Welcome to this podcast of The People’s Pharmacy.

Joe

00:06-00:26

You can find previous podcasts and more information on a range of health topics at peoplespharmacy.com. Medicine has changed tremendously over the last several decades. How has technology transformed health care? This is The People’s Pharmacy with Terry and Joe Graedon.

Terry

00:34-00:42

Clinicians can now care for patients at home and monitor them with sophisticated technology almost as well as if they were in the hospital.

Joe

00:42-00:51

Patients themselves now have access to far more information than ever before. They can look at the results of lab work on their patient portal.

Terry

00:52-01:01

Patients can also communicate online through thousands of support groups that are specific to health conditions. They’re also beginning to conduct research.

Joe

01:01-01:08

Coming up on The People’s Pharmacy, how patients are using technology to heal health care.

Terry

01:14-02:10

In The People’s Pharmacy Health Headlines:

We’re still in the middle of a serious flu season, and scientists have just published another reason to try to avoid coming down with influenza. Beyond the fever, congestion, aches, coughs, and general misery of flu, influenza A infections can harm the heart.

When the virus invades the heart, it can kill specialized heart muscle cells that control rhythmic pumping. People with pre-existing heart disease appear to be especially vulnerable. In some cases, white blood cells of a type called prodendritic cell 3 pick up the infection in the lungs and transfer it to the heart.

The interferon that these white cells produce damage the heart muscle cells. The scientists suggest that this new information could help doctors mitigate heart risk in people with influenza A.

Joe

02:11-03:16

A study published in Nature Communications demonstrates that the bacterium Chlamydia pneumoniae can lie dormant in the eye and brain for years. This respiratory pathogen can lead to sinus infections or pneumonia. It can also trigger infection-driven inflammation.

C. pneumoniae has been linked to hard-to-treat asthma and COPD. The latest research, however, suggests that this microbe might also be linked to Alzheimer disease. People with dementia had substantially greater amounts of C. pneumoniae in their retinas and brain tissues than people with normal cognitive ability.

The investigators report that infection-driven aggravation of neuroinflammation appears to lead to amyloid beta buildup in the brain and cognitive decline. This research opens up new opportunities. For one thing, it raises the possibility that patients with detectable C. pneumoniae bacteria might benefit from antibiotic-based treatment.

Terry

03:16-04:46

If you’re a coffee drinker, you may be helping your brain. That’s the conclusion of a new study published in JAMA. The title of the article is Coffee and Tea Intake, Dementia Risk and Cognitive Function. The investigators tracked 131,821 volunteers for up to four decades. These were participants in the Nurses’ Health Study and the Health Professionals’ Follow-Up Study.

The researchers were asking this question, is long-term intake of caffeinated and decaffeinated coffee associated with risk of dementia and cognitive outcomes? The authors answered that question this way.

In two large prospective cohorts, including U.S. female and male participants with repeated dietary assessments and extended follow-up, higher intake levels for caffeinated coffee, tea, and caffeine were associated with a reduced risk of dementia. The researchers also reported modestly better cognitive function in the caffeinated tea and coffee consumers.

Two or three cups of coffee, or one or two cups of tea, were enough to demonstrate cognitive benefits. People who drank decaffeinated coffee or tea did not seem to experience any advantage. The authors point out that their findings are consistent with other research reporting protective associations of caffeine and coffee intake with cognitive decline.

Joe

04:47-05:57

Lifelong learning is also associated with a reduced risk for Alzheimer’s disease. That’s the conclusion of research published in the journal Neurology. There were nearly 2,000 octogenarians without dementia who began the study. Follow-up lasted for about eight years.

The researchers questioned people about childhood learning experiences as well as current behavior. People who participated in intellectually stimulating activities such as learning a language, reading, or writing seemed to develop Alzheimer’s disease five years later than other people in the sample who had not embraced lifelong learning.

Those who developed mild cognitive impairment did so seven years later than those without lifelong learning. Those with higher lifetime enrichment showed less cognitive decline before death compared with those with less opportunity to learn.

The lead author noted, quote, Our findings are encouraging, suggesting that consistently engaging in a variety of mentally stimulating activities throughout life may make a difference in cognition.

And that’s the health news from the People’s Pharmacy this week.

Terry

06:14-06:17

Welcome to the People’s Pharmacy. I’m Terry Graedon.

Joe

06:17-06:32

And I’m Joe Graedon. Medicine has changed radically over our lifetimes. It’s hard to imagine that doctors once made house calls, but medical technology is revolutionizing how doctors diagnose and treat their patients.

Terry

06:32-06:40

Patients are also adopting technological advances to improve their knowledge and access to the most appropriate treatments.

Joe

06:40-07:08

To learn more about how doctors envision this revolution, we turn to Dr. Marschall Runge. He was the former executive vice president for Medical Affairs at the University of Michigan, Dean of the Medical School, and CEO of Michigan Medicine. Dr. Runge is the author of “The Great Healthcare Disruption: Big Tech, Bold Policy, and the Future of American Medicine.”

Terry

07:08-07:12

Welcome to the People’s Pharmacy, Dr. Marschall Runge.

Dr. Marschall Runge

07:13-07:16

It’s great to be with you today. Thank you very much, and I look forward to our conversation.

Joe

07:17-07:51

Dr. Runge, you come from a long line of health professionals. It’s my understanding that your grandfather was a doctor and your father was a doctor and you’re a cardiologist and you’re the head of Michigan Medicine at the very pinnacle of modern medicine in America.

So how has healthcare changed since when your dad was practicing cardiology, when your grandfather was a doctor? Would they even recognize what is going on today?

Dr. Marschall Runge

07:52-08:48

I don’t think they would. They’d say, ‘What is this?’ My grandfather was in an era where really everything about being a physician was talking to patients. The physical examination was critical.

There were very few tests, the electrocardiogram, he was one of the early people working on electrocardiograms. And that was about the only tool we had in x-rays. Fast forward to my father. My father was a cardiologist. I grew up in Austin, Texas. And he did cardiology and internal medicine. Cardiology was just an emerging field at that time.

And one of the things that was most fascinating, I would go around with him sometimes on hospital rounds. And he had a great way with people. He also did house calls, and he had gotten his car rigged up with a mobile headlight kind of thing that he could shine to see if he was at the right address. And I thought as a kid, that was so cool.

Terry

08:50-09:04

Well, the very idea of making house calls is, I think, probably completely foreign to most doctors today. The whole setup of medicine must have changed so much.

Dr. Marschall Runge

09:05-09:45

It has. And while there still are a few people, generally senior people, let’s call them, like myself, who would be willing to make house calls, very few people make house calls. Now, on the other hand, I think we’ll be seeing much more care in the home now and in coming years due to technology, where a person can get a very high level of care at home with what are essentially wearable devices and contact with health care providers.

In fact, I had one experience like that. And it is… so I think it’s the pendulum swings one way, it swings back the other way. But the overall practice of medicine is so different than it used to be.

Joe

09:45-10:09

Well, you know, we love the idea of home care, which brings up a very personal experience for you. You had a hip replacement surgery, and things did not go as anticipated, and you ended up being at home but receiving very high-quality care.

Can you tell us about that whole experience shortly, please?

Dr. Marschall Runge

10:10-12:31

I’m glad to. I needed a hip replacement. It’s usually a pretty routine procedure, you go home the same day. I did. But I had an unusual complication, which made me short of breath. It wasn’t a pulmonary embolism. It was little shards of fat from where they put in the implant.

And so I went to the hospital, went back to the hospital, went to the emergency room. My oxygen saturation was very low. They whipped me upstairs. And after a little while, I was in the ICU. And I’d been there about 24 hours, and I was feeling much better, but I was feeling much crazier. I just couldn’t stand it. I was getting checked on every 30 minutes; I couldn’t get any sleep.

And I knew we had a great home care program. So I said, how about if I go home? And they said, no, no, no, you don’t want to do that. And I said, why not? And they said, well, what if something happens? And I said, well, what do you tell other people who are you going to send to home care? And they said, yeah, but you’re different.

I think they were worried that I would have a bad experience. But they let me go, and I went home. And waiting for me, by the time I got home, were several sort of wearables. I had a pulse oximeter, I had a mobile blood pressure cuff, I had several other things. I had an incentive spirometer. And I had a nurse who went through all this with me, was available over the next several days, 24-7 if needed. And I had a physical therapist who came later that same day and had physical therapy every day.

And the fantastic part is I slept for about 12 hours the first night I was at home because I was just so exhausted. So I think, and my experience is very similar to others, that one of the ways that people can get better faster, have less expense, and a better outcome is to have home care.

We now know in our system, some people that would ordinarily go from either a phone call to their doctor or a visit in the clinic directly to the emergency room, there’s a group of those people who can get care at home. So we’re trying to figure out how can we best expand that kind of care. Because for those of you who have been in hospitals, it’s no walk in the roses. And I think that this is one of the many ways in which technology can actually improve the care of all of us.

Joe

12:32-13:13

Well, the thing that’s so fascinating to me is that there are so many devices now. I mean, you can monitor not just blood pressure, but blood glucose. You can measure respirations. You can measure temperature. And it’s even conceivable that you could have a video hookup so that a nurse back in Ann Arbor at the hospital could be monitoring you. And if there was an emergency, you could have two-way communication with a healthcare professional almost immediately.

So, you know, the idea of being able to sleep at home, wow, what an improvement over trying to sleep in the hospital.

Dr. Marschall Runge

13:15-14:11

You’re right. And, in fact, there is very high-level potential for monitoring, which is used in some more rural settings. And it’s, I won’t call it an ICU, but it’s not too far from an ICU with all the components you just mentioned.

And the care, it’s called a virtual CCU or a virtual emergency room. And the care can be excellent. Now, you have to have health care providers, doctors, nurses, and others who are enthusiastic about this and who understand how to use the technology. But I think we’ll see much, much more of it.

And for example, a day in the hospital is about $1,500 on a regular floor, more like over $2,000 in an ICU. And a day at home is about $200. And so we worry about the cost of health care. That’s one way we can make it better. But as you said, it’s much better for the person, for the patient.

Terry

14:13-14:56

Well, I know there are plenty of patients who are using, as you put it, wearables to improve their own health. And they’re going online to find other people with similar problems, similar health problems, so that they can all learn from each other.

I’m wondering now, how can patients and doctors work together to use, for example, artificial intelligence for diagnosis? When you’ve got something wrong with you and you don’t know what it is, how does that diagnostic process play out differently now or in the future with the access to artificial intelligence?

Dr. Marschall Runge

14:58-17:35

Well, on the one hand, I am a huge fan of artificial intelligence. And I think that one of the benefits it brings is the ability to analyze huge amounts of data, very large amounts of data that would be hard to do in any other way.

And I think that in the near future, we’ll see much more use of wearables. And today, it’s hard to connect the wearables to the electronic medical record, but that’s getting better. So that when you come in for a visit, or it can be done trans-telephonically, an awful lot of information can go to your doctor about what’s been going on in your life. And it can be cataloged in a way that allows it to suggest different potential early diseases or different potential approaches that might be used.

To give you a couple of examples, there are devices, both devices and telephones, which can, at a very early stage, pick up depression and allow it to be detected and dealt with far before it gets to impacting one’s life. In other examples, there are wearables that can show that how much variation you have in your heart rate is one of the markers for how heart healthy you are. And that can be measured. And that’s currently being able to be measured on wearables.

But once those download into your electronic medical record, I think that’ll be even much more powerful. To give you one little example of why I think AI has such promise, if you ask for your medical records these days, they’re so extensive, you get it on a CD or maybe on a USB drive, and you try to read it, and you could spend hours and hours and hours reading it. If you take that and put it on, make a PDF out of it and put it into your favorite AI engine, in about two minutes, you can get, if you say, I’d like a three-page summary of what my major medical problems are, what medications I’m currently taking, and what medications have not worked. You get it. You get it in about two minutes or less.

It’s that kind of technology and that kind of reach that AI has that I think will really change healthcare. I want to put in one negative about AI. I don’t think AI bots can replace human beings and human interaction. And I think that will come to be proven over and over again. It already has in some circumstances. So this idea that you’d have an AI bot instead of a doctor or a nurse or a therapist, I don’t see that happening.

Terry

17:36-17:41

Dr. Marschall Runge, thank you so much for talking with us on The People’s Pharmacy today.

Dr. Marschall Runge

17:42-17:44

Well, thank you both. It’s great to talk to you.

Terry

17:45-18:06

You’ve been listening to Dr. Marschall Runge. He’s a cardiologist and the former executive vice president for medical affairs at the University of Michigan, dean of the medical school and CEO of Michigan Medicine. Dr. Runge is the author of The Great Healthcare Disruption, Big Tech, Bold Policy, and the Future of American Medicine.

Joe

18:07-18:13

After the break, we’ll talk with Susannah Fox, a patient advocate who helps people navigate health and technology.

Terry

18:14-18:21

Dr. Tom Ferguson was a great proponent of how e-patients would help to heal healthcare itself. How is that vision holding up?

Joe

18:21-18:24

We’ll discuss patient-led research in a variety of forms.

Terry

18:25-18:28

The Internet and PubMed changed people’s access to medical knowledge.

Joe

18:29-18:35

Now people are using AI to help them understand medical articles and check on a differential diagnosis.

Terry

18:39-18:42

You’re listening to The People’s Pharmacy with Joe and Terry Graedon.

Joe

18:51-18:54

Welcome back to The People’s Pharmacy. I’m Joe Graedon.

Terry

18:54-19:08

And I’m Terry Graedon.

Terry

19:24-19:39

Today, we’re excited to be talking with someone we have known and admired for decades. Susannah Fox was with the Pew Research Center Internet Project when the three of us were participating in Dr. Tom Ferguson’s e-patient scholars group.

Joe

19:39-20:20

Our goal was to turn medicine upside down and empower patients through access to information and tools. Our organization was a precursor to the Society for Participatory Medicine.

We turn now to Susannah Fox, who helps people navigate health and technology. She served as Chief Technology Officer for the U.S. 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.

She’s the author of “Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care.”

Terry

20:20-20:24

Welcome back to The People’s Pharmacy, Susannah Fox.

Susannah Fox

20:24-20:25

Great to be here.

Joe

20:27-20:55

Susannah, our mutual friend, Dr. Tom Ferguson, died 20 years ago. He was a leading advocate in the world for medical self-care. He really spearheaded this vision. I wonder how that vision has changed, how it helped lead the patient revolution in health care that you have written about. How’s it fared over the last two decades?

Susannah Fox

20:56-22:13

I think Tom would be amazed at the progress that’s been made by patient survivors and caregivers who are demanding access to information, demanding access to data and tools to take care of themselves. He was a visionary. He foresaw how the internet was going to change healthcare.

And yet I think he would be surprised by how quickly it’s moved forward. For example, one of the great milestones to me in research is that a paper written for Nature, one of the preeminent scientific journals that was written primarily by patients, by people who live with the disease that they’re writing about, has now been downloaded almost 2 million times.

And that is a milestone that I think would make Tom so happy because he was an early advocate for people having access to information to help them make better decisions and to help clinicians and do their work better.

Terry

22:14-22:22

Absolutely. I think he would be thrilled at that. Can you tell us a little bit more about that paper? What were the patients writing about?

Susannah Fox

22:22-24:02

They were writing about long COVID. And as you might recall, during the early part of the pandemic, clinicians and scientists told everyone that if you got better in two or three weeks, you were through the woods. And COVID-19 was primarily a respiratory virus that if it didn’t kill you, that you would feel better.

And it was patients themselves who identified that it’s not only a respiratory virus. They started tracking the symptoms that they were experiencing. They were able to not only track those symptoms, but do a worldwide survey, publish that data, get the attention of the British government, of the government in the U.S., and eventually the scientific community adopted the name that patients themselves were using, which is long COVID.

And these patients, along with Eric Topol, decided to publish a paper that looked at the mechanisms and recommendations that they had for further study of long COVID. And it was led by the citizen scientists behind the patient-led research collaborative for long COVID. And it’s a milestone to see that they were, number one, able to publish it in Nature Microbiology, but now it is in the 99th percentile of most influential papers.

Terry

24:02-24:40

It really is a milestone. And the fact that it was, in fact, patient-led is still pretty unusual and pretty remarkable. Another hopeful sign that I have seen is that there are a couple of journals, I think they’re mostly British journals, that will, in their little summary of the research, will say, what input did patients have into the plan or the protocol of this study?

And unfortunately, most of them still say patients didn’t have any input, but at least they’re thinking that patients might have some input.

Susannah Fox

24:41-25:00

I love that. Yes, British Medical Journal [BMJ] and The Lancet Psychiatry are requiring that authors share how patients, how people with lived expertise contributed to the research. And by asking that question, they’re changing the default. I love that.

Joe

25:01-25:50

Susannah, you know, Dr. Tom Ferguson loved the idea that people would have access to information. And these days, people do have an extraordinary amount of access. For example, the National Medical Library in the U.S., PubMed, is available to people all over the world.

And yes, most of the journals only provide abstracts, but there are more and more full-text articles available on PubMed, which means that it’s not just doctors, it’s not just scientists and researchers who access this information, it’s everybody, and people are so much more literate, most of the time they can kind of figure out what those docs are talking about.

Susannah Fox

25:52-26:55

Yes, and what I also see spinning it forward is people using large language models like ChatGPT to feed those abstracts or full-text articles into essentially a translation app to say, can you put this into words for me? Or can you do a differential diagnosis based on my child’s symptoms and what we know from these latest articles?

And people are leveraging these tools. Another thing that I love is you can use ChatGPT to translate it into a different language to say, my mom only speaks Spanish. Can you please translate the science into Spanish? Or can you make this into a cartoon that makes it easy for everyone in my community to understand the basics of what’s going on?

That is the promise that I think Tom would be most excited about.

Terry

26:57-27:10

What sorts of precautions should patients be exercising if they’re using ChatGPT, for example, to try to see whether the diagnosis they’ve been given makes sense?

Susannah Fox

27:12-28:48

Well, here I look to the people who are shining a light on the path forward in terms of how patients are using AI effectively. I’m thinking of e-patient Dave DeBronckart, and I’m thinking of Hugo Campos. What they have written about is that ChatGPT and tools like it should be used to help us reason through a problem.

You can be in conversation with these tools, but it’s best not to ask for a diagnosis. It’s better to say, if you were teaching a medical school class on this topic, what are the most important things for you to teach medical students? And in that way, you’re asking the tool to teach you, maybe a lay reader, about these issues that you don’t yet understand.

What I really appreciate about this era that we’re in is that we are able to skip ahead from square one, where we may not even understand the diagnosis, and we have to make sure we’re spelling it correctly. And we can skip ahead three or four spaces on the game board so that we can understand the mechanisms of disease, what the latest research is, and then we can still go in and get the expert opinion based on our medical history with a clinician.

Joe

28:50-30:17

Susannah, what you’re talking about in terms of medical education is quite fascinating and using artificial intelligence like ChatGPT or Claude or whichever particular program you are comfortable with. But I’m wondering how medical education has adapted to patients all over the world communicating with one another in support groups or accessing medical information.

Because it seems to me, and I could be mistaken, that medical education hasn’t changed that radically in the last 20 years. It still seems like the old medical model that Tom was ranting about, that pyramid with the super specialists at the top and then the internists and then the family practice docs at the bottom and the geriatricians even below that, that it’s still the old medical model that patients, although they’ve got a lot of autonomy and a lot of access to information, that the medical system hasn’t changed that dramatically.

And we still have to wait for hours in the emergency departments, and there’s still an imbalance between doctors and patients. Help me understand better how the system has adapted to this revolution that you have talked about.

Susannah Fox

30:19-32:17

Well, first, I should say there are many systems, especially in the United States. And what we are observing in the research that I do and in talking with clinicians and patients is that you’re absolutely right. In areas of healthcare where people seem, whether it’s clinicians or patients, where something’s pretty well known, then they don’t seem to feel the need to look to people with lived expertise to contribute.

But if there is a problem that is particularly vexing, if there is an issue that has historically been invisible or ignored, or it’s rapidly emerging, as we saw in the case of long COVID, then specialists are more likely to listen to patients. The most extreme examples that I’ve studied are in communities of people living with rare diseases and life-changing diagnoses, where they’re really medical mysteries. It’s a genetic disease. It’s something where there’s very few people who live with the condition.

And so it is the communities who are pooling data, who are pooling resources, who deeply understand the mechanisms of disease. That’s when clinicians and scientists are very interested in learning from patients. And again, this could be something that is a genetic disease with a very small number of people or something more widespread like long COVID, that if there is a mystery that needs to be solved and patients, survivors, and caregivers can help solve it, that’s when companies and scientists are building those intake valves for that lived expertise.

Terry

32:18-32:33

Susannah, something you just said triggered my memory of a schematic you put in Rebel Health in terms of how well-known something is. It’s a four-part schematic. Can you describe it to us, explain it to us?

Susannah Fox

32:33-34:22

Sure. I came up with this as a way to try to explain why some issues are more ripe for the patient-led revolution and some are not. So if you can imagine a line right down the middle, and at the top is the word visible, and at the bottom is the word invisible, and then a line through the middle from left to right, and at the far left are the words needs not met, and at the right are the words needs met.

And what I mean by that is whether things are visible or invisible to mainstream healthcare and whether people’s needs are being met or not by mainstream healthcare. So the bottom left quadrant is where I spend a lot of my time as an anthropologist, spending time in communities of people whose needs are not being met and they are or feel invisible to mainstream healthcare.

At the opposite end of the spectrum are issues where people’s needs are being met and they are visible to mainstream healthcare. And here we might think of a typical pregnancy and childbirth or a cancer diagnosis. We, as an American healthcare system, we have invested a lot of money in cancer. And so people kind of know what they’re doing. It’s still really tough, but people really know what they’re doing in some areas. Whereas down in the quadrants where people’s needs are not being met, we might see a more rare genetic disease or an emerging diagnosis.

Terry

34:23-34:26

Thank you, that was helpful.

Joe

34:26-34:54

One of the challenges on those rare diseases, Susannah, is the cost. Because patients and specialists and researchers have teamed up to create some unbelievable treatments and in some cases cures.

But the cost, it can run half a million, a million, and in some cases over two million dollars.

Terry

34:54-35:08

Well, you can get that even in that upper right quadrant where your needs are theoretically being met and they’re visible. But if it’s going to cost a million dollars, I don’t thin