Jan. 8, 2026

Who Owns Health: Systems, Stories, Or Us?

Send us a text The average primary care visit lasts about 18 minutes. Complex symptoms, multiple conditions, and a maze of electronic forms don’t fit neatly into that window—and neither do the emotions that come with being sick. We sat down with advocates including a medical writer who was part of ACT UP, a sickle cell advocacy leader and a humanities scholar turned epidemiologist to unpack how patients, families, and clinicians can turn limited time into better outcomes with clearer language...

Send us a text

The average primary care visit lasts about 18 minutes. Complex symptoms, multiple conditions, and a maze of electronic forms don’t fit neatly into that window—and neither do the emotions that come with being sick. We sat down with advocates including a medical writer who was part of ACT UP, a sickle cell advocacy leader and a humanities scholar turned epidemiologist to unpack how patients, families, and clinicians can turn limited time into better outcomes with clearer language, smarter tools, and community trust.

We dig into the numbers behind health literacy and why discharge summaries so often miss the mark, then translate that research into steps anyone can use: keep a simple medication list, coordinate records across specialists, and lean on reliable sources like local health departments and major nonprofits. Faith Adjei-Sarpong shares how sickle cell stigma—especially around pain and opioids—creates dangerous delays in care, and how sharing real stories online and off can shift bias. Drs. Heather Duncan and Patrick Murphy explain how plain-language micro-learning helps both sides of the exam room, and how medical writers can bridge patients and providers without diluting the science.

We also surface the trust problem. The wellness industry wins attention with community and clear words, even when products are unregulated. So we talk about meeting people where trust already lives—barber shops, neighborhood centers—and why that approach worked from HIV activism to recent Mpox vaccination drives. Along the way, we address clinician burnout, the pressure of quotas, and the case for labor power in medicine to protect both providers and patients.

If you care about health equity, patient rights, and practical advocacy, this conversation gives you a roadmap: listen first, use plain language, build locally, and measure success by human impact. Subscribe, share with a friend who needs it, and tell us what you think!

Fact-check note: The pharmaceutical industry is currently valued around $1 trillion, but it is expected to exceed $3 trillion after 2030.

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Also, please don’t hesitate to ask questions or tell us which topics you want us to cover in future episodes. To get in touch, drop us a line in the comment section or send us a message on social media.
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See you next time for a new episode!

00:00 - One Health And Today’s Focus

00:53 - Meet The Guests And Their Paths

04:20 - Why Advocacy Still Matters

05:28 - The 18-Minute Visit Problem

09:05 - Sickle Cell, Stigma, And Bias

14:12 - Bridging The Gap With Plain Language

18:20 - Productivity Pressure And Physician Burnout

21:30 - Wellness Industry, Trust, And Misinformation

26:20 - Community-Based Education That Works

31:10 - Lessons From HIV To MPOX

35:05 - Getting Started As An Advocate

42:20 - Practical Help For Patients And Caregivers

44:35 - Closing Thoughts And Resources

WEBVTT

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This is a podcast about OneHealth.

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The idea that the health of humans, animals, plants, and the environment that we all share are intrinsically linked.

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Coming to you from a team of scientists, physicians, and veterinarians, this is Infectious Science.

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Where enthusiasm for science is contagious.

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Hello, hello, hello.

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Welcome back to the Infectious Science Podcast.

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How's everybody doing?

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Camille, Christina, how are you guys doing?

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We're doing.

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How's life in med school, Christina?

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It's going well.

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Everything feels surreal right now just because we're getting closer and closer to taking our first board exam.

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So things are really ramping up.

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But every day is a blessing.

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We're getting there day by day.

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Yeah, cool.

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You got this.

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Yeah.

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So today we're gonna do something different, right?

00:00:56.960 --> 00:01:06.799
Camille, we got we have three guests and we talk about infectious diseases, but more like in the periphery of infectious diseases.

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But yeah, tell us about it, Camille.

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What's going on today?

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What are we doing today?

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Yeah, so we're taking a different step than talking to some experts in patient advocacy who we're really excited to be on the call with.

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So we're very fortunate to be joined by two medical writers.

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So Dr.

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Patrick Murphy and Dr.

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Heather Duncan.

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Could you tell us a little bit about how you got into patient advocacy?

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What's interesting to you, what you do?

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Yeah, I am a humanities scholar, turned epidemiologist, and I consider myself a science communications and education specialist now.

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And Patrick and I co-own a medical writing and research support services business called MD Science Consulting and Communications.

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And I'm also a patient with multiple chronic health conditions, so I'll be speaking from my personal experience as well.

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Thanks for joining us.

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Dr.

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Murphy, over to you.

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Hi, I'm Patrick Murphy.

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I have a PhD in biomedical sciences, specifically molecular genetics and RNA virology.

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As Heather mentioned, co-owner of Medical Writing Company.

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And I've always wanted to advocate for patients.

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I first became aware of the need for advocacy during the AIDS crisis in the late 80s, early 90s.

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And that had me look at it a couple different ways.

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It was very upfront about patients experiencing discrimination and also people trying to help and having barriers.

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Plus, on the other side, we didn't know a lot about the disease and how it's communicated.

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So I looked into how do we find that out, and I joined a study that I was in for three years where I've been tested for every STD you could possibly ever get.

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And so that really showed me that both things patients need help, but so do healthcare people.

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And there are new things that come up.

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And that's one thing I've been really working on leveraging my expertise to help people.

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I've done advocacy for four people now, and how I approach it is I try to advocate for both the patient and the healthcare person, so our team.

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So that's where I'm at with things now.

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I'm in a program for specializing in continuing medical education writing as a medical writer, and that's where I'm at.

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Very cool.

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Thank you.

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And we're also super fortunate to be joined by a fellow UTMB student.

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Faith, can you give us a bit of your background?

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Howdy, everyone.

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My name is Faith Ajay Sarparton, and I am a health advocate.

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I am specifically a sickle cell advocate for the sickle cell community.

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I'm a loud and proud voice for my community, and I am a Master of Public Health student at UTMB.

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My passion for advocacy stemmed from having a lot of systemic inequities from my experience growing up with sickle cell, and it fueled my passion to being a driving force of change for my community and not only my sickle cell community, but all of the marginalized communities in healthcare.

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Absolutely.

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Yeah, and I think I'm really excited to get into this with all of you because you all are much more well-versed in this than I am.

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And so I think it's super cool because I get the opportunity to learn from you all and hear about the different aspects for different diagnoses and disparities.

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And just for our listeners, could all of you just take a moment to tell us really like why patient advocacy is needed and what it looks like in the current healthcare climate from your experience with it?

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I can start for me, and I didn't mention, but I also have experience as a patient.

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And I've just noticed, I thought that so many of the barriers that were in the way in the early 80s and late 90s were gone, and that we were doing much better.

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And I found out through personal experience, that's not necessarily always the case.

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And I was able to navigate it, but it made me think I wasn't dying, I didn't have cancer.

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What if I was?

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How would I be able to be level-headed about it?

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And what if I don't have the education?

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What's the average person supposed to do?

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And so I just take it as part of having my education experience means I have responsibility to help in any way I can.

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I can speak to this a little bit as a public health professional and epidemiology, we're always interested in the population level of these things.

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And just to give a sense of some of the challenges and what healthcare looks like right now for a lot of people, currently the average primary care appointment in the US lasts on average 18 minutes.

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And that doesn't mean even that in that 18 minutes you're purely addressing a health concern because there's administrative stuff and everything that the doctor needs to document and so forth.

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And so in this same study, this was published in JAMA, actually, the one that I'm referring to, they found that not only is that time that you spend with the doctor shrinking, but also the time within that appointment to address specific concerns is also shrinking and it's on a downward trend.

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And just to give a quote from the study, because I think it really captures the problem really well, the other issue is that health literacy is really low in this country.

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And another report from the Milken Institute found that like 88% of adults have health literacy that's inadequate to navigate the healthcare system, and especially when you're doing so in such a small period of time.

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And they mentioned that studies in this area have repeatedly demonstrated that health literacy among adults is strongly associated with other determinants of health disparities, and that interactions with the healthcare system are shaped by age, gender, race, and ethnicity, religion, socioeconomic status, and language proficiency, and that there's often a mismatch between the individual care and the healthcare system that can manifest as low health literacy and exacerbate those health disparities.

00:07:02.639 --> 00:07:09.439
And to pile on to this situation, the prevalence of comorbid conditions in this country is also increasing.

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The CDC as of 2020 found that more than 25% of US adults have been diagnosed with multiple chronic health conditions.

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So I think all of these things together create a system where if you're not really on the ball and you don't understand exactly what you're going there for, what the problem is, and then able to understand what your doctor tells you, this can create a situation where patients are just lost.

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And I pulled another study as well, it's from the NIH.

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They did a study of discharge summaries and patient education materials and looked at the Fleisch Kincaid grade level and reading score, which is a measure that we often use in medical writing for creating plain language summaries and things like that.

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And they found that only 24% of the patients in the study were able to actually comprehend their dismissal summary.

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And then they found that of people who were readmitted to the hospital, because this was people who'd been to the emergency department, 65% of them were patients who had inadequate health literacy.

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So what that tells us is that there really is an actual impact on the individuals who are not able to basically effectively advocate for themselves.

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Is this in a hospital setting?

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Is this like on average of all different professions?

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Because you would imagine that in primary care, right, if you go to your GP or something, you would expect that they would spend more time with you, which is probably not the case anymore, like it used to be decades ago.

00:08:45.919 --> 00:09:00.000
And my second question for you is do you think that the 18 minutes, as you mentioned with administrative components to it, is this just purely driven by the quota that doctors need to reach or any other influences on that?

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Yeah, so to address your first question about the study, this was specifically in the primary care setting, because I wanted to find some information specifically about primary care appointments, because that's the first, if you start to get symptoms of something, you don't know what's going on, usually that's the first person you turn to.

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Now that of course assumes that you have a primary care physician, which is not the case for a lot of people in the United States.

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So yeah, that is in that primary care setting.

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And a lot of us, I think, would wish that was longer.

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I just had a meeting with my primary care physician earlier this week and had the same experience of having to rush along very quickly.

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But to answer your second question, I think it's a lot of things.

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I think part of it is we really shifted dramatically towards EHR's electronic health records.

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And while there are a lot of advantages to that, having everything maintained ideally in one space and the ability for other doctors in the network to access your information easily, there's also a lot of documentation that's required as a part of that system as well.

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And so I think a lot of that time gets eaten up on those things.

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But yeah, I think the administrative work is probably the biggest driver of this because there's just more and more required of physicians and they're not being given an adequate amount of time, I think, to do everything that they're expected to do.

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I think the other thing is there's a lot more expectations as well, and they're dealing with people that are sicker on average.

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It's a lot of things that are contributing.

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So you touched on a lot of aspects that contribute to the issues we see that really like lead to us needing patient advocacy, right?

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There's a ton of disparities, there's a lack of health literacy, certainly like the time that you can get allotted into a schedule and also the healthcare provider stress of working within that system is also very intense.

00:10:48.399 --> 00:10:55.039
And I was just wondering, Faith, I know you've been like looking at your LinkedIn stuff, you've been a sickle cell advocate for almost, it seems like your entire life.

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So could you talk about which of the kind of issues that Heather was highlighting do you think most acutely affect the community that's living with sickle cell anemia?

00:11:04.240 --> 00:11:06.480
So definitely health literacy is worrying.

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She mentioned that that was one of the points I had on my notes too.

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But there's also the stigma because sickle cell patients were known for needing opioids to relieve some of our pain.

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So that stigma being drug seeking.

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And most of the patients are people of color.

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So these are black and brown people coming to ERs and all of that, and we're being pushed out, not being treated equally or being seen because we're seen as drug seeking.

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So advocacy exists to bridge that gap so that we could receive the care that we deserve, equal care.

00:11:38.639 --> 00:11:39.039
Interesting.

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I didn't know about the drug seeking aspect of it.

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It's interesting, huh?

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Yeah.

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Wow.

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I think that's also part of why advocacy is so important because I also didn't know that drug seeking was associated like I definitely knew that civil cells associated with intense amounts of pain at times.

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And I think one of the reasons patient advocacy is so important is that with many different diagnoses, there's this lack of being heard or like going in to get treatment, but not getting what you actually need from a provider.

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And I think that's really where this gap exists.

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And I'm sure it exists in all health systems.

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I think we definitely see it exacerbated here in the United States.

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And so I'm I guess I'm just curious to hear from you all how can patients or how can their family or friends really influence health care change for the better to like help improve these issues that we're seeing?

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Like you all have experience with this either as being a patient or being an advocate.

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And what do you think can really be done?

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What can we do, right?

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We know there's a problem, we know there's a huge issue.

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So I like to start with that one.

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I think that patients and their families should just start sharing their stories, and they should share their stories with research groups and people that want to broadcast these because now we're utilizing social media to do advocacy.

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It used to just be lobbying.

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I started this off when I was eight and now I'm 25.

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And when I started off, I was just a scary little girl at the Texas house arguing back with Rick Perry about different little things.

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And I didn't know how to like get to that point.

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I had to go to my hematologist to get to a point to just be able to be at the house just to speak, they do my testimony.

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But not a lot of people know how to do that.

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So now we can utilize social media, utilize all these pharmaceutical groups that want to capture our stories to sell their drugs in a sense, not to, you know, tell our stories as well.

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But use those outlets to tell your story.

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That's one big thing I tell people and work your way up from there.

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Because I went from doing the Texas house to now doing content creation, and now I'm about to go to DC with all of this.

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So use your voice, loud and proud.

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What's your feedback that you get?

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Do people say yes?

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Or do you have haters?

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I found you on LinkedIn, right?

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So you're doing a great job.

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You have your great reach, but there's probably also some downside to it, right?

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Or is it all good feedback?

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Most of it is good feedback, but I'll say on social media listening lab for for instance, on TikTok and Instagram, you'll see those haters.

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And some people were like, oh, she is doing it for intention.

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And I just came out with a post saying, hey, this is not for attention, this is for advocacy.

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I've had seen so many people pass away from this disease, unfortunately, that I couldn't be quiet anymore.

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And that was just me at eight years old.

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That sparked a change in me.

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And I've been telling my story since.

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At that point, I just block out the noise too, because these same people can't walk the same mile in my shoes.

00:14:33.440 --> 00:14:36.480
So that's the same point I put in my mind every day.

00:14:36.879 --> 00:14:38.639
Yeah, and I think that's an excellent point.

00:14:38.720 --> 00:14:41.279
And I think too, there's an another layer to it, right?

00:14:41.360 --> 00:14:46.720
Like even back to what you're saying, Dennis, on people online basically stigmatizing someone for putting their voice out there.

00:14:46.799 --> 00:14:46.879
Yeah.

00:14:47.200 --> 00:14:53.440
I think there probably is a lot of stigma for any diagnosis that comes potentially with being part of a marginalized group.

00:14:53.519 --> 00:14:55.679
And in particular, this is infectious science.

00:14:55.840 --> 00:14:59.120
What we talk about all the time is that there's a stigma with infectious diseases, right?

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So particularly if it's an infectious disease, particularly something that might be chronic, things I'm thinking of are like hepatitis or HIV or things like that, there still exists such a stigma today.

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We've lived with these diseases for a very long time as a human collective, but still, I think there's a hesitation for people to put their voices out there, even though that that might be what it takes for people to start seeing the human element of these are people that deserve care.

00:15:24.000 --> 00:15:33.919
But that can be a really challenging thing, I think, when there's so much stigma involved, and especially because with a lot of healthcare diseases, I think in the United States, we put a lot of emphasis on productivity.

00:15:34.080 --> 00:15:40.559
And so there's this idea of if you are unwell and if you are chronically unwell, there's a judgment that comes with that, certainly here.

00:15:40.720 --> 00:15:49.919
And that's something that I think about a lot and I've certainly read about a lot, but I still don't know how to make that change because it is such a huge shift, and you're only gonna probably move it incrementally.

00:15:50.080 --> 00:15:51.519
But I don't know, it's something I think about a lot.

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That there's a lot of stigma attached to things, particularly if they're infectious, but even if they're not, because we have such a focus on someone being healthy so that they can contribute.

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And for listeners, I'm putting that in quotes.

00:16:01.440 --> 00:16:08.720
I'm like, Because certainly, as we've seen with so many people from these communities, that's not the case, that we link this kind of health and productivity thing.

00:16:09.200 --> 00:16:18.080
When I looked at the problem, and this is one of the reasons why I got into the field I'm in, I think what's really critical is to have somebody in the middle.

00:16:18.320 --> 00:16:28.559
So somebody who can take everything and without changing the meaning, put it into plain language for the patient to understand.

00:16:28.879 --> 00:16:40.000
And at the same time, if that individual can also speak in a manner that's appropriate to a healthcare person in the field, then they can bridge that gap.

00:16:40.159 --> 00:16:44.559
And medical writers are in a really great position to do that.

00:16:44.879 --> 00:16:57.360
But another thing that I found is really helpful is I'm in New York, and New York is very clear about what the responsibilities of healthcare people are, what they can and cannot do, and what the patient's rights are.

00:16:57.600 --> 00:17:02.080
And I have found that to be very useful and enlightening.

00:17:02.159 --> 00:17:13.680
And also if you present it in a non-hostile way, to say, hey, I know this, and it made me blah, blah, blah, then you they can often take that on as you being on their side.

00:17:13.839 --> 00:17:19.759
And if you can get both ends feeling like that, then you can really facilitate conversation.

00:17:20.000 --> 00:17:29.519
But one thing I know that's becoming really popular now is for continuing medical education, because as you guys mentioned, they don't have time.

00:17:29.599 --> 00:17:36.000
And they're actually, if you think about it, penalized for taking the time to do what they need to do.

00:17:36.240 --> 00:17:42.720
And so one way of assisting them is packaging the education in micro-learning bytes.

00:17:43.119 --> 00:17:47.359
So it's something that somebody can read in 10, 15 minutes.

00:17:47.519 --> 00:17:54.720
And I was thinking if you could do that for both the patient and the healthcare person, then it's digestible, it's useful to them.

00:17:54.799 --> 00:17:58.640
But if you turn in a huge paper, they're not gonna read that.

00:17:58.880 --> 00:18:00.079
They don't have time.

00:18:00.240 --> 00:18:02.079
And so I find that helps.

00:18:02.319 --> 00:18:03.200
Can I jump in?

00:18:03.279 --> 00:18:05.839
So Christina is, of course, our medical student, or we're very proud of.

00:18:05.920 --> 00:18:10.720
And I was wondering if you could comment on that, Christina, on like, what do you see happening within our medical school?

00:18:10.799 --> 00:18:12.640
Like, how are people taught to work within the system?

00:18:12.720 --> 00:18:18.079
Or like, how do you see providers trying to advocate and meet this gap that that Patrick is highlighting?

00:18:18.400 --> 00:18:20.000
I'm so glad we're actually talking about this.

00:18:20.079 --> 00:18:27.680
And I really appreciate Camille, the fact that you brought up the idea of productivity and how our country specifically is incredibly focused on productivity.

00:18:27.759 --> 00:18:33.759
So not only on the patient, but also there's a huge focus in productivity on the physician, which I think Dr.

00:18:33.839 --> 00:18:35.759
Duncan also spoke about and touched on.

00:18:36.000 --> 00:18:41.119
And I think that we forget a lot of the times that physicians too are just people.

00:18:41.279 --> 00:18:44.559
Physicians too are patients to another physician as well.

00:18:44.799 --> 00:19:00.240
And so I really appreciate that we're talking more about the administrative structure of our healthcare system and not so much just focusing on my physician isn't giving me X, my physician doesn't give me Y, my physician is ignoring me because of Z.

00:19:00.559 --> 00:19:25.839
Because it's incredibly hard to give, for example, in Faith's case, a sickle cell patient the treatment, the examination to actually listen to them, to provide them great care when you have max 18 minutes and you have 40 other patients on your schedule for the day because you have administrative pressures on you saying you need to meet these quotas or you're either going to get docked or you're going to get fired.

00:19:25.920 --> 00:19:32.240
And I think that those are really important things that we need to maybe focus on a little bit more in our country.

00:19:32.400 --> 00:19:35.200
But there's a lot of responsibility that falls on physicians' shoulders.

00:19:35.359 --> 00:19:43.680
And there are a lot of physicians that I know that are very aware of this and they don't like the fact that we only have really like 15 minutes per patient.

00:19:43.839 --> 00:19:48.880
In school, we're taught that is like the average that you get per patient clinically.

00:19:49.039 --> 00:19:52.319
And then in the real world, you're gonna need to do things a whole lot faster.

00:19:52.480 --> 00:19:55.119
So that's why we practice it so much in medical school.

00:19:55.279 --> 00:20:06.079
And on one end, yes, that's great, you need to become really proficient, but on the other end, They also tell you, yeah, it's not fair when it comes down to it, but these are just stressors that you have to meet.

00:20:06.240 --> 00:20:07.519
And so I wanted to know, Dr.

00:20:07.599 --> 00:20:26.960
Duncan, specifically, if you know of any ways that not only physicians, but also patients and the general public can advocate in a way that would potentially lead to a change in the structure of the administrative end of medicine versus just placing those pressures on physicians themselves.

00:20:27.119 --> 00:20:30.559
Because that's something that I'm too at a loss for and don't really know where to start.

00:20:30.720 --> 00:20:36.079
I guess Faith can also help us with that one, seeing as how she was an eight-year-old in the Texas Capitol.

00:20:36.319 --> 00:20:36.720
But yeah.

00:20:37.039 --> 00:20:38.960
Yeah, I think those are all great questions.

00:20:39.119 --> 00:20:45.279
And they are questions that keep me up at night as well as someone who's interested in population health.

00:20:45.440 --> 00:20:55.759
And I think it's really important to consider patient advocacy within the framework of these structural determinants of health, which is what we talk about this a lot as epidemiologists.

00:20:55.920 --> 00:21:10.240
And part of when we talk about structural determinants of health, we often think about things like our neighborhood and our background and education level, but I think the administrative aspects of it also need to be considered as part of those structural determinants of health.

00:21:10.400 --> 00:21:27.039
And there are researchers, I think, that are trying to, for example, some of the studies that I cited from JAMA and from the other one, there are people that are trying to document the connection between health outcomes and these restrictions that physicians have on them.

00:21:27.200 --> 00:21:30.799
And I think that's really important work to show, hey, there's evidence here.

00:21:30.960 --> 00:21:32.960
It's not just a workplace issue.

00:21:33.279 --> 00:21:44.160
My personal feeling is that one thing that physicians could really do to advocate for themselves and in turn to advocate for their patients is to start talking to labor unions.

00:21:44.400 --> 00:21:55.039
This has started in some hospital systems, but I really think that there needs to be more solidarity between labor movements and medicine and public health in this country.

00:21:55.279 --> 00:22:00.720
It's a very uncomfortable thing that I think it's difficult to discuss and it's highly politicized.

00:22:00.960 --> 00:22:07.920
But I think that physicians have a lot more power in this respect than they realize that they do.

00:22:08.160 --> 00:22:13.599
And I also love that to bring it back to what we were talking about regarding productivity and health.

00:22:13.839 --> 00:22:19.200
The US healthcare system is has a very strange idea, I think, of what determines health.

00:22:19.359 --> 00:22:25.759
Because, on the one hand, we produce all of this research that shows how this is not an individual thing.

00:22:25.920 --> 00:22:41.359
Just to look at, for example, the wellness industry has really taken advantage of this rhetoric about how you can take charge of your health and all you need to do is spend X, Y, and Z on these supplements or these, whatever the case may be, but it's always about spending money, right?

00:22:41.599 --> 00:22:52.960
And so I think the tragedy of all of this is that we really monetized health in a way that benefits the people who are doing the monetizing, but not the patients.

00:22:53.200 --> 00:23:05.440
And I think this is becoming a more public conversation as well, particularly with certain events in the news, like the execution, murder of the CEO, right?

00:23:05.519 --> 00:23:13.920
We're now talking about these things and how much they affect everyone, and not just people who are considered traditionally marginalized.

00:23:14.079 --> 00:23:16.000
This is impacting everybody.

00:23:16.160 --> 00:23:23.599
And I know that we're going to be sharing personal stories at some point in here, but all six of us are all very highly educated, medically literate people.

00:23:23.759 --> 00:23:32.880
And I think that we all have our own experiences as well, where we've had to advocate for ourselves because otherwise we wouldn't be getting the care that we need.

00:23:39.519 --> 00:23:41.359
Maybe you can explain that to me again.

00:23:41.599 --> 00:23:45.920
Because I feel like what we hear now is that everybody can consult with Dr.

00:23:46.000 --> 00:23:50.640
Google and goes to the doctor and you know everything about their disease.

00:23:50.799 --> 00:23:56.960
And so when you say health literacy influences the this, can you dissect this a little bit for me?

00:23:57.039 --> 00:23:57.759
What do you mean by that?

00:23:58.160 --> 00:23:58.640
Absolutely.

00:23:58.799 --> 00:23:59.119
Yeah.

00:23:59.279 --> 00:24:10.559
So it may surprise you to hear that the average American, where it is not recommended that doctors position themselves when they have these conversations, is at a sixth grade reading level.

00:24:10.720 --> 00:24:21.359
So when we're talking about explaining a health condition, I think a lot of physicians think that they are breaking it down in a way that's understandable for their patients.

00:24:21.680 --> 00:24:25.839
But chances are you're probably going way over the head of your patients.

00:24:26.000 --> 00:24:40.240
And so the health literacy aspect is just, I think, a very basic element of this, where if you're a patient and you don't understand your diagnosis or you don't understand the medications that you've been given, this creates all sorts of problems with patient compliance.

00:24:40.400 --> 00:24:42.559
It has a big impact on patient compliance.

00:24:42.720 --> 00:24:44.880
And in turn, that affects their outcomes.

00:24:45.200 --> 00:24:50.240
If I could jump in here with a personal anecdote on health literacy, I am a PhD student.

00:24:50.400 --> 00:24:58.079
My program requires us to take a year of med school in order to basically give us kind of the best opportunity to do what we call translational research.

00:24:58.160 --> 00:25:04.319
So basic science research that we can move forward with hopefully making up therapeutics for patients, things like that.

00:25:04.640 --> 00:25:08.799
And in like my second year, my dad ended up hospitalized.

00:25:08.880 --> 00:25:10.799
And my mom was like, Hey, can you come back to New York?

00:25:10.880 --> 00:25:12.079
I'm in Texas for school.

00:25:12.240 --> 00:25:12.720
And I did.

00:25:12.799 --> 00:25:19.359
I mean, it wasn't until I arrived and read my dad's medical chart and I saw myocardial infarction that I was like, You've had a heart attack.

00:25:19.519 --> 00:25:20.640
Neither of my parents knew.

00:25:20.799 --> 00:25:22.799
All of the doctors had just said myocardial infarction.

00:25:22.960 --> 00:25:24.319
My dad was like, I'm gonna walk out of here.

00:25:24.400 --> 00:25:26.480
I was like, You are not walking out of here.

00:25:26.720 --> 00:25:31.359
But these are things, and like my dad is a college-educated guy, and my mom is a master's in education.

00:25:31.519 --> 00:25:37.119
Like, they're educated people, but we often don't use plain language when we discuss with patients.

00:25:37.279 --> 00:25:39.759
And that can really lead to a misunderstanding.

00:25:39.920 --> 00:25:42.559
And I think too, both my parents certainly had access to the internet.

00:25:42.640 --> 00:25:46.559
But if you're in a really stressful situation, are you Googling myocardial infection?

00:25:46.640 --> 00:25:47.839
I would because I'm me.

00:25:48.000 --> 00:25:52.240
But I think most people are just trying to like figure out what's going on.

00:25:52.559 --> 00:25:54.559
If you're in a hospital, it's a stressful environment.

00:25:54.640 --> 00:25:58.400
And something that's come up for me is I'm listening to everyone talk, and this is a great conversation.

00:25:58.559 --> 00:26:01.119
I wanted to touch on two points trust and burnout.

00:26:01.279 --> 00:26:07.680
So, first, I think there's a lot of burnout from patients who do not feel they're getting the care they need, but there's also a lot of burnout from physicians.

00:26:07.920 --> 00:26:16.799
I cannot even imagine being given like 18 minutes to make a connection with somebody and give someone a diagnosis and also then make sure I get it right.

00:26:16.960 --> 00:26:21.440
Because if you don't get it right, there's potentially a lot of consequences that would stress me out so much.

00:26:21.519 --> 00:26:24.880
And so I can only imagine the load that takes on doctors over time, right?

00:26:24.960 --> 00:26:27.440
You must get empathy fatigue, you must get really burned out.

00:26:27.599 --> 00:26:49.920
But at the same time, patients are probably burned out maybe financially because it's difficult to pay for care, definitely emotionally, because it's really difficult to manage something, especially if it's chronic, to just having to keep finding a doctor or maybe not getting diagnosed, but knowing something is wrong, which is something that is definitely a plague in America, that you'll see a lot of things where people are like, I am physically unwell, but no one can figure out what exactly it is, right?

00:26:50.000 --> 00:26:54.160
And so that's something that I think there's a lot of stories about out there.

00:26:54.400 --> 00:27:02.240
Moving on from burnout, I also just wanted to talk about trust because I think scientists have lost trust with the public, but I think so have in many ways medical providers.

00:27:02.319 --> 00:27:05.680
And that's I don't think necessarily just through the fault of scientists or medical providers.

00:27:05.759 --> 00:27:08.319
I think it's everybody kind of being like, who do you trust?

00:27:08.480 --> 00:27:15.759
And with the idea of health literacy, there's a lot of literature out there that the best health literacy interventions don't come from in hospitals.

00:27:15.839 --> 00:27:24.559
It's not from them hearing it from a physician, it's from them getting in at a school or like at a local barber shop or some type of other like local public event, because those are the people they trust.

00:27:24.640 --> 00:27:25.680
That's their community, right?

00:27:25.759 --> 00:27:32.799
And so it's people that look like you, that talk like you, that come from your background that are explaining it to you in a way that seems trustworthy.

00:27:32.960 --> 00:27:38.160
It's not a doctor coming in for 18 minutes and making that connection of, hey, gears out of me, litter it on your health.

00:27:38.400 --> 00:27:43.599
Even though we wish it could happen like that, because that would be defined and be like, yes or no, we got this.

00:27:43.680 --> 00:27:46.799
But I think the reality is that it's not just a yes or a no, it's a maybe.

00:27:46.880 --> 00:27:54.880
It's more of a gray area of are we engaging communities to make sure that whoever you trust is someone you can actually get reliable health information from.

00:27:55.119 --> 00:28:11.440
Because that system also works in the other way, so terribly wrong when you got this misinformation and then it's this feedback loop of people talking to each other, and it is the community that they trust, but it's feeding them this information of like, no, that's not true, or something that's false and that we've disproved with medicine or science.

00:28:11.759 --> 00:28:13.039
Christina, go for it.

00:28:13.359 --> 00:28:19.920
Yeah, I love that you actually brought up that the idea of trust and like communities, because that to me takes me back to the point that Dr.

00:28:20.000 --> 00:28:24.960
Duncan made about the wellness industry versus let's say the actual health industry.

00:28:25.119 --> 00:28:31.119
So another way and a more modern way that people build communities, as we know, is through social media, right?

00:28:31.359 --> 00:28:40.559
And so I feel like a lot of people do have a lot of trust in like wellness influencers and in the communities that they've built around their big profiles.

00:28:40.799 --> 00:28:48.480
But a lot of these influencers also use, I guess, a lot of big wellness companies as means of making money.

00:28:48.640 --> 00:28:51.039
And from an individual standpoint, it makes sense.

00:28:51.279 --> 00:28:58.559
But I don't think people realize how unregulated a lot of the wellness industry actually is and the products that they make.

00:28:58.720 --> 00:29:07.359
I think the wellness industry itself is valued at around$6 trillion, whereas the pharmaceutical industry itself is valued around$3 trillion.

00:29:07.519 --> 00:29:17.200
And I don't trust me on those stats, but I do know that the wellness industry is significantly higher in value in the United States of America than the pharmaceutical industry.

00:29:17.359 --> 00:29:31.440
Yet there is such a trust in the wellness industry compared to the pharmaceutical industry in the US, which makes sense because, like you were saying, Camille, there have been years of burnout, not only for physicians, but also with doctors.

00:29:31.599 --> 00:29:39.279
And it's so hard to build that trust with your primary care physician or with any physician when you don't even have time with the physician in the first place.

00:29:39.680 --> 00:29:53.759
But a lot of these products that these social communities are pushing, which are said to be really healthy for you, or natural products, X, Y, Z, they've actually more so been proven to be detrimental to health.

00:29:53.920 --> 00:30:09.200
There's a lot of studies that have shown that certain products that people use regularly are either used wrong, used in doses that are toxic, or just should not be taken regularly in someone who is healthy otherwise and is just looking to better their health.

00:30:09.440 --> 00:30:12.000
So I think that's a really interesting point that you made, Camille.

00:30:12.160 --> 00:30:21.599
And I think that the growth of the wellness industry really shows that people do want to take better care of their health and that they do want to have a more active role in their health.

00:30:21.839 --> 00:30:29.039
I just think that maybe there's just this lack of understanding or maybe trust is the best that we can put it.

00:30:29.359 --> 00:30:36.480
Because when it comes down to it, like there's so much research, there's so much knowledge, there's so much facts about the care that physicians provide, right?

00:30:36.559 --> 00:30:48.799
Like we literally have to go through four years of training, then three years or two years minimum of residency versus just someone who's gonna make this green supplement and I want to make trillions of dollars.

00:30:49.119 --> 00:30:51.119
Yeah, I just want to follow up on that, Christina.

00:30:51.359 --> 00:30:54.960
As you were talking about this, I was asking myself, why is this the case?

00:30:55.200 --> 00:30:58.079
And I think we should ask ourselves why is this the case, right?

00:30:58.240 --> 00:31:00.240
Why is this a six trillion dollar industry?

00:31:00.319 --> 00:31:05.039
And it's not because these health influencers are so good at what they do.

00:31:05.279 --> 00:31:08.720
Based on the consumer demand theory, this is what people want.

00:31:08.960 --> 00:31:19.599
We created a platform for those influencers and for those people because we want to look pretty and we wanna be slim and we wanna do all those things, right?

00:31:19.680 --> 00:31:23.440
And we want to take one pill that makes us super smart and super healthy.

00:31:23.519 --> 00:31:31.839
And so maybe I misunderstood what you said, but it sounded like they have all this power over us, but we actually created the monster that we live in, right?

00:31:32.160 --> 00:31:35.119
Our society has certain demands.

00:31:35.200 --> 00:31:39.200
And I always wonder why are things this way and how can we change them?

00:31:39.359 --> 00:31:45.839
For example, as scientists, we've definitely lost trust with the community, but how can we improve this, right?

00:31:46.000 --> 00:31:48.240
I think we've made mistakes as scientists.

00:31:48.400 --> 00:31:52.640
We live in our ivory towers and not go out and do advocacy.

00:31:52.799 --> 00:31:57.039
And so my question for you, Christina, is how can we change these things?

00:31:57.200 --> 00:31:58.079
I'm just curious.

00:31:58.480 --> 00:31:58.799
Yeah.

00:31:58.960 --> 00:32:04.559
So going off what you said originally, Dennis, I wasn't so much talking about like the beauty supplements and stuff like that.

00:32:04.720 --> 00:32:09.839
More than anything, I was talking about, let's say, like greens powders are super popular right now, right?

00:32:10.000 --> 00:32:13.359
Gut health is they have lead in them, they're not a contaminants.

00:32:13.680 --> 00:32:14.240
Exactly.

00:32:14.400 --> 00:32:20.000
And I don't think people realize these things and they don't realize like how unregulated this market is.

00:32:20.079 --> 00:32:28.079
But like I also said, I think one big reason why the wellness industry is what it is because people want a sense of agency in their own health.

00:32:28.240 --> 00:32:36.960
It is so difficult to be jumping through all the loops that you have to jump through in other countries in the world as well, in order to receive any form of health care.

00:32:37.200 --> 00:32:42.960
It's incredibly expensive here in the US for sure, just to go and see a PCP and get your basic lab work done.

00:32:43.119 --> 00:32:46.000
If you don't have insurance, that's hundreds of dollars right there.

00:32:46.240 --> 00:32:49.839
If you do have insurance, you're already paying your monthly payment.

00:32:50.000 --> 00:33:00.000
Plus, on top of that, you have a copay, plus you have, depending on what your insurance will cover, still probably hundreds of dollars just for your annual wellness visit, let's say.

00:33:00.160 --> 00:33:05.039
So that's not accessible to a huge population of our country from the get-go.

00:33:05.200 --> 00:33:21.759
So instead of having to pay those hundreds of dollars, if you're told, hey, you've got tummy issues, instead of going to the doctor, real quick, try this$40 supplement, you're probably going to go and try the$40 supplement based on the community that's built around the supplement that says, oh my gosh, this helped me.

00:33:21.839 --> 00:33:26.000
This was the key to all my problems and your symptoms sound like that person's problems.

00:33:26.160 --> 00:33:28.400
So I go back to Camille's thing about the community.

00:33:28.480 --> 00:33:34.000
I think it also has to do with the agency that people want in their healthcare and in their health in general.

00:33:34.160 --> 00:33:35.839
And I think it's also about accessibility.

00:33:36.079 --> 00:33:37.519
And then what was your question, Dennis?

00:33:37.839 --> 00:33:40.640
The question is why are certain things the way they are, right?

00:33:40.799 --> 00:33:42.160
And then how can we change them?

00:33:42.319 --> 00:33:56.160
So when you say you can buy a$40 supplement, for example, and it's totally unregulated, it's not FDA regulated, and 85% of that stuff is fillers, some starch fillers and so on, how can we change that, right?

00:33:56.240 --> 00:34:06.640
Why are we spending so much money on advertising this stuff and putting it on the top shelf in the stores that you go into while it's like totally a non-functional product?

00:34:06.720 --> 00:34:08.159
And how can we change those things?

00:34:08.880 --> 00:34:13.679
I don't, I think we have some experts here that are a lot more suited to answer that question in general than I am.

00:34:13.840 --> 00:34:16.639
But on top of that question, you know what?

00:34:16.719 --> 00:34:17.679
I'll ask a separate question.

00:34:17.760 --> 00:34:19.519
I'll let you guys answer that question first.

00:34:20.320 --> 00:34:25.440
So I was listening to you, and what I kept thinking of is like, why does this occur?

00:34:25.679 --> 00:34:27.119
How do we change it?

00:34:27.280 --> 00:34:33.760
And I think it goes back to what Heather said about health literacy, and that we have an immense problem with that.

00:34:33.840 --> 00:34:38.320
And I don't see how anybody who lived through the pandemic can say otherwise.

00:34:38.639 --> 00:34:41.599
And scientists did a dreadful job.

00:34:41.840 --> 00:34:54.079
We didn't explain to them what we were doing and why we were doing it and how it worked in plain language, and so I think that really highlighted that.

00:34:54.159 --> 00:35:00.880
It also really highlighted disparities, especially in terms of discrimination.

00:35:01.119 --> 00:35:02.960
That's something we definitely saw.

00:35:03.119 --> 00:35:08.559
And I think the answer is to teach people health literacy.

00:35:08.800 --> 00:35:14.559
And this is maybe an unpopular thing, but I don't think one should trust anyone.

00:35:14.800 --> 00:35:18.239
One should look at evidence and make their decision.

00:35:18.480 --> 00:35:24.719
And we don't make that evidence available to people in a way that they can understand it.

00:35:24.880 --> 00:35:26.639
And I think that's the key.

00:35:26.800 --> 00:35:33.840
And I know lots of people go to alternative things because they're not getting their needs met in our system.

00:35:34.320 --> 00:35:40.159
And that's something I've experienced personally, and I understand why someone would do that.

00:35:40.320 --> 00:35:45.360
And I think that's definitely on public health officials and scientists and healthcare people to do that.

00:35:45.760 --> 00:35:47.599
Yeah, I absolutely agree with you, Patrick.

00:35:47.760 --> 00:35:56.559
And I think to support your point, that all these studies that have come out that the more educated the population is, the healthier the population is.

00:35:56.800 --> 00:36:05.039
There's this correlation you get with a lot of the Scandinavian countries where there is a lot of science literacy or health literacy, and it's a very healthy population.

00:36:05.199 --> 00:36:05.840
Yeah, absolutely.

00:36:06.239 --> 00:36:09.039
Yeah, so I I think there's so many things that I want to respond to.

00:36:09.440 --> 00:36:11.440
So many people brought up really great points.

00:36:11.599 --> 00:36:19.280
I wanted to address the influencer social media aspect of this because I think that's the elephant in the room when we're talking about trust.

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And I think that what people need to understand about our present moment is that there is a real concerted and I think organized effort in this country to erode trust, not just in health, but in all institutions.

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And the sooner that we acknowledge that and talk about it, I think the better.

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And also the burden of entry into influencing is very small, right?

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You don't need a lot to get started.

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Not to say that influencing is something that everyone can do, but I think it's also something that is not natural to a lot of those of us who work in medicine and public health.

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A lot of us are not interested necessarily in having a platform.

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I think that needs to change.

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And this is one reason that we're on this podcast today, right?

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Because I think people who have this type of education need to be using their voices.

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And there are good examples out there.

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Like one name that comes to mind is Caitlin Jettelina, who has her your local epidemiologist platform, and then those nerdy girls do a lot of this work as well.

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Caitlin Rivers is another person.

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But there are increasingly, I think, scientists and physicians that are joining this world of influencing and social media, and I think that's a really good thing.

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And I think that the more that those people can appeal to just everyday people, and they're very accessible as well, it creates this counter-narrative that we can latch on to and say, hey, you're receiving these messages.

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Here's an alternative point of view.

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And we're gonna explain to you why we came to these conclusions about this health topic or this product or whatever the case may be.

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But I think it's also important to keep in mind that this is all driven by the overall economic system that we live in.

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It's not necessarily that there's some evil person pulling the strings in the background, it's that there are economic motivations for these things.

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