How Patients, Clinicians, and Communities Can Close the Healthcare Gap

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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Transcript

One Health And Today’s Focus

SPEAKER_08 0:09

This is a podcast about OneHealth. The idea that the health of humans, animals, plants, and the environment that we all share are intrinsically linked. Coming to you from a team of scientists, physicians, and veterinarians, this is Infectious Science. Where enthusiasm for science is contagious.

SPEAKER_02 0:28

Hello, hello, hello. Welcome back to the Infectious Science Podcast. How's everybody doing? Camille, Christina, how are you guys doing?

SPEAKER_03 0:36

We're doing.

SPEAKER_02 0:38

How's life in med school, Christina?

SPEAKER_03 0:40

It's going well. Everything feels surreal right now just because we're getting closer and closer to taking our first board exam. So things are really ramping up. But every day is a blessing. We're getting there day by day.

SPEAKER_02 0:51

Yeah, cool.

SPEAKER_03 0:52

You got this.

SPEAKER_02 0:53

Yeah. So today we're gonna do something different, right? Camille, we got we have three guests and we talk about infectious diseases, but more like in the periphery of infectious diseases. But yeah, tell us about it, Camille. What's going on today? What are we doing today?

SPEAKER_08 1:10

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. So we're very fortunate to be joined by two medical writers. So Dr. Patrick Murphy and Dr. Heather Duncan. Could you tell us a little bit about how you got into patient advocacy? What's interesting to you, what you do?

SPEAKER_07 1:30

Yeah, I am a humanities scholar, turned epidemiologist, and I consider myself a science communications and education specialist now. And Patrick and I co-own a medical writing and research support services business called MD Science Consulting and Communications. And I'm also a patient with multiple chronic health conditions, so I'll be speaking from my personal experience as well.

SPEAKER_08 1:54

Thanks for joining us. Dr. Murphy, over to you.

SPEAKER_01 1:57

Hi, I'm Patrick Murphy. I have a PhD in biomedical sciences, specifically molecular genetics and RNA virology. As Heather mentioned, co-owner of Medical Writing Company. And I've always wanted to advocate for patients. I first became aware of the need for advocacy during the AIDS crisis in the late 80s, early 90s. And that had me look at it a couple different ways. It was very upfront about patients experiencing discrimination and also people trying to help and having barriers. Plus, on the other side, we didn't know a lot about the disease and how it's communicated. 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. And so that really showed me that both things patients need help, but so do healthcare people. And there are new things that come up. And that's one thing I've been really working on leveraging my expertise to help people. 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. So that's where I'm at with things now. I'm in a program for specializing in continuing medical education writing as a medical writer, and that's where I'm at.

SPEAKER_08 3:25

Very cool. Thank you. And we're also super fortunate to be joined by a fellow UTMB student. Faith, can you give us a bit of your background?

SPEAKER_04 3:33

Howdy, everyone. My name is Faith Ajay Sarparton, and I am a health advocate. I am specifically a sickle cell advocate for the sickle cell community. I'm a loud and proud voice for my community, and I am a Master of Public Health student at UTMB. 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. Absolutely.

Why Advocacy Still Matters

SPEAKER_08 4:07

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. 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. 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?

SPEAKER_01 4:31

I can start for me, and I didn't mention, but I also have experience as a patient. 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. And I found out through personal experience, that's not necessarily always the case. And I was able to navigate it, but it made me think I wasn't dying, I didn't have cancer. What if I was? How would I be able to be level-headed about it? And what if I don't have the education? What's the average person supposed to do? And so I just take it as part of having my education experience means I have responsibility to help in any way I can.

The 18-Minute Visit Problem

SPEAKER_07 5:19

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. 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. 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. 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. 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. 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. 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. And to pile on to this situation, the prevalence of comorbid conditions in this country is also increasing. The CDC as of 2020 found that more than 25% of US adults have been diagnosed with multiple chronic health conditions. 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. And I pulled another study as well, it's from the NIH. 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. And they found that only 24% of the patients in the study were able to actually comprehend their dismissal summary. 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. 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.

SPEAKER_02 8:29

Is this in a hospital setting? Is this like on average of all different professions? 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. 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?

Sickle Cell, Stigma, And Bias

SPEAKER_07 9:00

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. 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. So yeah, that is in that primary care setting. And a lot of us, I think, would wish that was longer. 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. But to answer your second question, I think it's a lot of things. I think part of it is we really shifted dramatically towards EHR's electronic health records. 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. And so I think a lot of that time gets eaten up on those things. 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. 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. It's a lot of things that are contributing.

SPEAKER_08 10:28

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? 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. 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. 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?

SPEAKER_04 11:04

So definitely health literacy is worrying. She mentioned that that was one of the points I had on my notes too. But there's also the stigma because sickle cell patients were known for needing opioids to relieve some of our pain. So that stigma being drug seeking. And most of the patients are people of color. 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. So advocacy exists to bridge that gap so that we could receive the care that we deserve, equal care.

SPEAKER_02 11:38

Interesting. I didn't know about the drug seeking aspect of it. It's interesting, huh?

SPEAKER_08 11:43

Yeah. Wow. 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. 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. And I think that's really where this gap exists. And I'm sure it exists in all health systems. I think we definitely see it exacerbated here in the United States. 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? Like you all have experience with this either as being a patient or being an advocate. And what do you think can really be done? What can we do, right? We know there's a problem, we know there's a huge issue.

SPEAKER_04 12:34

So I like to start with that one. 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. It used to just be lobbying. I started this off when I was eight and now I'm 25. 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. And I didn't know how to like get to that point. 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. But not a lot of people know how to do that. 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. But use those outlets to tell your story. That's one big thing I tell people and work your way up from there. 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. So use your voice, loud and proud.

SPEAKER_02 13:44

What's your feedback that you get? Do people say yes? Or do you have haters? I found you on LinkedIn, right? So you're doing a great job. You have your great reach, but there's probably also some downside to it, right? Or is it all good feedback?

Bridging The Gap With Plain Language

SPEAKER_04 13:58

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. And some people were like, oh, she is doing it for intention. And I just came out with a post saying, hey, this is not for attention, this is for advocacy. I've had seen so many people pass away from this disease, unfortunately, that I couldn't be quiet anymore. And that was just me at eight years old. That sparked a change in me. And I've been telling my story since. At that point, I just block out the noise too, because these same people can't walk the same mile in my shoes. So that's the same point I put in my mind every day. Yeah, and I think that's an excellent point.

SPEAKER_08 14:38

And I think too, there's an another layer to it, right? Like even back to what you're saying, Dennis, on people online basically stigmatizing someone for putting their voice out there. Yeah. I think there probably is a lot of stigma for any diagnosis that comes potentially with being part of a marginalized group. And in particular, this is infectious science. What we talk about all the time is that there's a stigma with infectious diseases, right? 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. 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. 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. 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. 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. But I don't know, it's something I think about a lot. 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. And for listeners, I'm putting that in quotes. 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.

SPEAKER_01 16:09

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. So somebody who can take everything and without changing the meaning, put it into plain language for the patient to understand. 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. And medical writers are in a really great position to do that. 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. And I have found that to be very useful and enlightening. 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. And if you can get both ends feeling like that, then you can really facilitate conversation. 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. And they're actually, if you think about it, penalized for taking the time to do what they need to do. And so one way of assisting them is packaging the education in micro-learning bytes. So it's something that somebody can read in 10, 15 minutes. 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. But if you turn in a huge paper, they're not gonna read that. They don't have time. And so I find that helps.

SPEAKER_08 18:02

Can I jump in? So Christina is, of course, our medical student, or we're very proud of. And I was wondering if you could comment on that, Christina, on like, what do you see happening within our medical school? Like, how are people taught to work within the system? Or like, how do you see providers trying to advocate and meet this gap that that Patrick is highlighting?

Productivity Pressure And Physician Burnout

SPEAKER_03 18:18

I'm so glad we're actually talking about this. 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. So not only on the patient, but also there's a huge focus in productivity on the physician, which I think Dr. Duncan also spoke about and touched on. And I think that we forget a lot of the times that physicians too are just people. Physicians too are patients to another physician as well. 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. 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. And I think that those are really important things that we need to maybe focus on a little bit more in our country. But there's a lot of responsibility that falls on physicians' shoulders. 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. In school, we're taught that is like the average that you get per patient clinically. And then in the real world, you're gonna need to do things a whole lot faster. So that's why we practice it so much in medical school. 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. And so I wanted to know, Dr. 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. Because that's something that I'm too at a loss for and don't really know where to start. I guess Faith can also help us with that one, seeing as how she was an eight-year-old in the Texas Capitol. But yeah.

Wellness Industry, Trust, And Misinformation

SPEAKER_07 20:37

Yeah, I think those are all great questions. And they are questions that keep me up at night as well as someone who's interested in population health. 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. 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. 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. And I think that's really important work to show, hey, there's evidence here. It's not just a workplace issue. 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. 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. It's a very uncomfortable thing that I think it's difficult to discuss and it's highly politicized. But I think that physicians have a lot more power in this respect than they realize that they do. And I also love that to bring it back to what we were talking about regarding productivity and health. The US healthcare system is has a very strange idea, I think, of what determines health. Because, on the one hand, we produce all of this research that shows how this is not an individual thing. 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? 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. 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? We're now talking about these things and how much they affect everyone, and not just people who are considered traditionally marginalized. This is impacting everybody. 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. 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.

SPEAKER_02 23:39

Maybe you can explain that to me again. Because I feel like what we hear now is that everybody can consult with Dr. Google and goes to the doctor and you know everything about their disease. And so when you say health literacy influences the this, can you dissect this a little bit for me? What do you mean by that?

SPEAKER_07 23:58

Absolutely. Yeah. 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. 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. But chances are you're probably going way over the head of your patients. 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. It has a big impact on patient compliance. And in turn, that affects their outcomes.

Community-Based Education That Works

SPEAKER_08 24:45

If I could jump in here with a personal anecdote on health literacy, I am a PhD student. 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. So basic science research that we can move forward with hopefully making up therapeutics for patients, things like that. And in like my second year, my dad ended up hospitalized. And my mom was like, Hey, can you come back to New York? I'm in Texas for school. And I did. 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. Neither of my parents knew. All of the doctors had just said myocardial infarction. My dad was like, I'm gonna walk out of here. I was like, You are not walking out of here. But these are things, and like my dad is a college-educated guy, and my mom is a master's in education. Like, they're educated people, but we often don't use plain language when we discuss with patients. And that can really lead to a misunderstanding. And I think too, both my parents certainly had access to the internet. But if you're in a really stressful situation, are you Googling myocardial infection? I would because I'm me. But I think most people are just trying to like figure out what's going on. If you're in a hospital, it's a stressful environment. And something that's come up for me is I'm listening to everyone talk, and this is a great conversation. I wanted to touch on two points trust and burnout. 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. 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. Because if you don't get it right, there's potentially a lot of consequences that would stress me out so much. And so I can only imagine the load that takes on doctors over time, right? You must get empathy fatigue, you must get really burned out. 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? And so that's something that I think there's a lot of stories about out there. 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. And that's I don't think necessarily just through the fault of scientists or medical providers. I think it's everybody kind of being like, who do you trust? 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. 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. That's their community, right? 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. 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. Even though we wish it could happen like that, because that would be defined and be like, yes or no, we got this. But I think the reality is that it's not just a yes or a no, it's a maybe. 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. 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. Christina, go for it.

SPEAKER_03 28:13

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. Duncan made about the wellness industry versus let's say the actual health industry. So another way and a more modern way that people build communities, as we know, is through social media, right? 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. But a lot of these influencers also use, I guess, a lot of big wellness companies as means of making money. And from an individual standpoint, it makes sense. But I don't think people realize how unregulated a lot of the wellness industry actually is and the products that they make. I think the wellness industry itself is valued at around$6 trillion, whereas the pharmaceutical industry itself is valued around$3 trillion. 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. 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. 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. 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. 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. So I think that's a really interesting point that you made, Camille. 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. I just think that maybe there's just this lack of understanding or maybe trust is the best that we can put it. 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? 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.

Lessons From HIV To MPOX

SPEAKER_02 30:49

Yeah, I just want to follow up on that, Christina. As you were talking about this, I was asking myself, why is this the case? And I think we should ask ourselves why is this the case, right? Why is this a six trillion dollar industry? And it's not because these health influencers are so good at what they do. Based on the consumer demand theory, this is what people want. 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? And we want to take one pill that makes us super smart and super healthy. 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? Our society has certain demands. And I always wonder why are things this way and how can we change them? For example, as scientists, we've definitely lost trust with the community, but how can we improve this, right? I think we've made mistakes as scientists. We live in our ivory towers and not go out and do advocacy. And so my question for you, Christina, is how can we change these things? I'm just curious.

SPEAKER_03 31:58

Yeah. So going off what you said originally, Dennis, I wasn't so much talking about like the beauty supplements and stuff like that. More than anything, I was talking about, let's say, like greens powders are super popular right now, right? Gut health is they have lead in them, they're not a contaminants. Exactly. And I don't think people realize these things and they don't realize like how unregulated this market is. 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. 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. It's incredibly expensive here in the US for sure, just to go and see a PCP and get your basic lab work done. If you don't have insurance, that's hundreds of dollars right there. If you do have insurance, you're already paying your monthly payment. 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. So that's not accessible to a huge population of our country from the get-go. 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. This was the key to all my problems and your symptoms sound like that person's problems. So I go back to Camille's thing about the community. I think it also has to do with the agency that people want in their healthcare and in their health in general. And I think it's also about accessibility. And then what was your question, Dennis?

SPEAKER_02 33:37

The question is why are certain things the way they are, right? And then how can we change them? 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? 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? And how can we change those things?

SPEAKER_03 34:08

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. But on top of that question, you know what? I'll ask a separate question. I'll let you guys answer that question first.

Getting Started As An Advocate

SPEAKER_01 34:20

So I was listening to you, and what I kept thinking of is like, why does this occur? How do we change it? And I think it goes back to what Heather said about health literacy, and that we have an immense problem with that. And I don't see how anybody who lived through the pandemic can say otherwise. And scientists did a dreadful job. 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. It also really highlighted disparities, especially in terms of discrimination. That's something we definitely saw. And I think the answer is to teach people health literacy. And this is maybe an unpopular thing, but I don't think one should trust anyone. One should look at evidence and make their decision. And we don't make that evidence available to people in a way that they can understand it. And I think that's the key. And I know lots of people go to alternative things because they're not getting their needs met in our system. And that's something I've experienced personally, and I understand why someone would do that. And I think that's definitely on public health officials and scientists and healthcare people to do that.

SPEAKER_02 35:45

Yeah, I absolutely agree with you, Patrick. 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. 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. Yeah, absolutely.

SPEAKER_07 36:06

Yeah, so I I think there's so many things that I want to respond to. So many people brought up really great points. 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. 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. And the sooner that we acknowledge that and talk about it, I think the better. And also the burden of entry into influencing is very small, right? You don't need a lot to get started. 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. A lot of us are not interested necessarily in having a platform. I think that needs to change. And this is one reason that we're on this podcast today, right? Because I think people who have this type of education need to be using their voices. And there are good examples out there. 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. Caitlin Rivers is another person. 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. 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. Here's an alternative point of view. 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. 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. 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. And I think to really address those problems, it has to be done to some extent at a legislative level. And unfortunately, I think there's a lot of resistance to pushing those ideas in public right now. But I think they need to be said.

SPEAKER_08 38:24

Responding to that, I think something that drives people to the wellness industry and away from maybe more of more traditional healthcare is that it's probably done in plain language and it's probably done by somebody who is from their community, right? So if you have somebody who has your background or kind of shares your interest or like is similar to you, you find them more trustworthy, right? And we know this. But then especially if they can talk to you in plain language, even if it's not true, it's certainly compelling, right? Because it's so much more compelling for somebody to tell me something that I understand than it is for somebody to tell me something that's true but that I don't understand, right? And so when we say, oh, like we need more education, we do need more education. But I don't think we need more education because people are foolish or something. I think we need plain language education from people who have the educational background. So whether that's healthcare providers, whether that's people with a master's in public health, whether that's people who are medical providers, whatever it is, and from scientists too, to get the information out there about an emerging infection or about a diagnosis or about genetic susceptibility to something. Those are so important. And that's a gap that we haven't filled, right? That we as scientists and as physicians, I think, tend to suck at the plain language part because it's not natural, right? You get to this point where you've come to such a level of education that you no longer remember what you never used to know. So it's so very difficult, I think, to put it back into language that I could use to explain to somebody in my family about a heart attack or something like that. Because after doing a cadaver lab, my perception of a heart attack is fundamentally altered. I view it differently. And so I think that there's a gap in that we need more plain language from medical professionals and scientists, but I think there's also a gap in that even Even once you have that plain language, we have severely broken trust with many of these communities. And that is not a linear or simple thing to rebuild, to have so thoroughly stigmatized so many groups throughout medical history, throughout scientific history. And I'm not talking even just like super far back in our timeline, right? There's been terrible things that have happened. You can think of the Tuskegee study, you can think of how people within the LGBTQIA population were treated in the 80s around the HIV epidemic. These are still very recent things that live in this kind of social conscious of like many groups. And I think rebuilding that trust, even if you use plain language to talk to people, and even if it's people coming from those communities within the education system and then going back to those communities, I think there's still that gap. And I was just curious if anyone could talk about how do we bridge that or how do you see it being bridged? Like what cool advocacy do you see happening? Something I can think of is I know a medical writing agency that's basically going back to the community for any health education. So when they want people to get certain testing done, they actually promote it through a local barber shop because that's who people trust to talk to, and that's where the guys go to chat. So if they're gonna get tested, it's because someone there was like, hey, have you done this? Instead of setting up in a hospital, we're like, who are you gonna get? The people already in the hospital. So I was just curious if anyone could talk about that. I know it's like a huge topic.

SPEAKER_04 41:18

What actually got me was something similar to this. I was 14 and I was off of advocacy because I was like, Yeah, nothing's really doing anything. And a hematologist and a young woman, they formed a sickle still advocacy group together. And they got a whole bunch of children, because I'm 14 at the time, a whole bunch of children in preteens, and they took us to what's this place called? I think it was called Gaddy Town at the time, but think of it like a Dave and Buster's. Mr. Gaddy's? Yeah. So they took there, and at the end they're like, okay, hey guys, this is what we want to try to do as well. We're here to talk to y'all about, I forgot what the club was called, but about this club and this line of third, and that's what really sparked my passion again. The one that was like dwindling down. So I feel like doing little things like that helped the community out.

SPEAKER_03 42:10

That is really cool, and that's honestly something that I never thought about, but I definitely see how that could be incredibly effective.

Practical Help For Patients And Caregivers

SPEAKER_07 42:15

Camille, what you brought up with the LGBTQIA plus community, I was just thinking about how in the wake of the AIDS pandemic, the response to MPOX, for example, was really swift and effective. And it was largely a community encouraging people to seek testing and to get vaccinated and things like that, and doing it in places like dating sites where people are gathering naturally for other things. I wondered also if Patrick had maybe some thoughts about that from the early days of the AIDS crisis and how your community worked together in that regard.

Closing Thoughts And Resources

SPEAKER_01 42:50

There's a couple of perspectives. When it first started happening, nobody in our country was wanting to do research on it or find out how to develop treatments. That actually was spearheaded in France. And people got killed just for being suspected of having HIV. It was bad. And I had several friends who were denied care, and they were even denied hospice, and it was bad. And one thing which I'm a little sad about is that the LGBTQ community was like, nobody's helping us. We're gonna do it ourselves. We started the studies to look at what kind of sexes and needle use or drug use is at risk, how can we protect ourselves? We started looking at how do we make changes. And that's one thing I did as a community advocate person is I would go to communities and community centers, or like you said, coffee shops, and find people who would listen so that at least I know I had one person in that community who was educated, but it was not easy at all. And I myself have been refused healthcare as soon as I identified as a gay person. That's not recent. That was, you know, behind that. So I'm thinking like that whole kind of a structure and how it hurts people, and I see that playing out again in a lot of minority communities. They're doing the same thing to them as already happening again. And the empox was hard because they first they categorized it as a sexually transmitted disease. And I was like, oh no, are we gonna do that again? How's that gonna go? And so those are the two things I think of. And I look at I had an experience where I had a condition that I couldn't get it diagnosed. I went to so many physicians, I had people tell me I was just mentally ill, I was hysterical, I was imagining it because I was in so much pain, and I kept telling them it was bone pain, and they wouldn't even look because they're like men don't have those problems. And all I could think of is how many women die because you say women don't have those problems. And this was recent, and it wasn't until I broke bones that I got it diagnosed, and I had to make my own treatment and I had osteoporosis, I completely reversed it. And so that's what made me feel like, oh, I can do that for me, I can do that for other people. I don't know how to charge them, so I pick case by case and do it for free because if I'm not helping somebody, why am I here? And that's why I'm moving again to the condemnation medical education, is because this is a way for me to help. It doesn't burden patients with anything. I want help. And I don't want to burden healthcare people with things, I want to help. And that's one thing I'm doing is I'm setting up several interviews with physicians to hear their side. What's it like for you? How can I help you? What can I do? So things like that.

SPEAKER_08 45:50

Okay, thank you so much for sharing that. That is super fascinating. I never knew that you did that work. And I remember being in undergrad when I was taking my first infectious disease class, and we had to watch the Act Up documentary. And I just want to throw that out for any of our listeners. If you want to watch a really powerful documentary, the act up documentary is all about basically the community being like, you're not gonna help us, so we have to help ourselves and what that looks like. And it's two great extremes and it's very heartrending. So I just want to throw that out and also thank you for doing that work because that is really important. And I think what it highlights is that if you compare something like the AIDS epidemic to like MPOX, I think in both cases it was this grassroots movement towards we're not getting the care that we need, so we're gonna figure this out ourselves. We're gonna make sure people can get vaccinated at bars for MPOX. That's something that happened here. And I know like the entire thing around ACTUP was about HIV advocacy and it came from within the community. And I think a lot of times when we think of interventions on health literacy, we think about going to a community. So I think it's always important to think about these people who also have their own way of doing things, and like this idea that you're coming in with your resources and you're gonna fix it is pretty arrogant. So just something that I want to throw out.

SPEAKER_01 46:56

I was in ACT Up.

SPEAKER_08 46:58

Oh my gosh, that's so cool! Oh wow. Oh, much respect. Oh my gosh. Wow. Okay, I feel like I'm meeting a celebrity here. Okay, okay.

SPEAKER_02 47:07

So I I have a question for all of our guests, and I'm putting myself in the position of our audience. If somebody in our audience wants to get into advocacy, patient advocacy, what would you recommend? What would be first steps? How can you be the mini influencer that makes a difference? And especially, and this is a little shaped by my own experience, how do you overcome the frustration with probably not reaching a lot of people, not seeing a lot of progress, or you not changing a lot of minds in the beginning? What platforms, what advice would you have? And how do you overcome the frustrations and be persistent?

SPEAKER_04 47:44

I would say start by looking for advocacy groups in your city or the town you're in. Start there, see what they're doing and see if you could collaborate with them. And if you want to branch out on your own stuff too, you're gonna start small for a little bit, but people will notice you. Just make sure that your work is impactful and factual at the same time. That's the most important thing, being factual. Because we have a lot of, I don't know, health advocates, influencers out on social media. I'm not gonna put someone out there. But there's one person who has sickle cell, she puts a lot of misinformation out there. And I'm someone who comments on her things like that's not ring fact, this is not true. And I'm not discrediting her like own experiences, but she's saying different things that sickle cell patients all uniformly have. So just be factual. And if it's something happening to you or a friend that you know or you're advocating for somebody, state that. I'll say the platforms there's Instagram. I don't know if we're gonna still have TikTok, but TikTok, I don't use X myself because I feel like X doesn't do anything. Yeah. LinkedIn is a great place professionally. That's how Dr. Bente met me. Yeah, that's the top platforms I use: Instagram, TikTok, and LinkedIn.

SPEAKER_02 49:04

And how do you overcome the frustrations?

SPEAKER_04 49:06

The frustrations. I feel like I just kept posting until I saw progress. So I don't think I was ever frustrated. Because if you look at my older videos, at least on TikTok and Instagram, when I first started, there were smaller numbers. But as I got bigger, those videos also got pushed up, if that makes sense. And views and likes and all of that. Even though they're not as top as like my top videos now, they're also still getting pushed up. Hey, it just takes time. Just be patient. Your time will come.

SPEAKER_02 49:35

What about you, Heather and Patrick? Your scientific writer, as your ideal to be these middleman between the patient and the doctors and so on. But if a general person just wants to make a difference, what would you advise? What's your recommendation?

SPEAKER_06 49:49

Patrick, do you want to go first?

SPEAKER_01 49:51

Okay. This is the way I look at it. When I'm thinking about things that way, I think the number one thing I have to have is I need to model the behavior that I'm promoting. If I don't do it myself, I'm worthless. And sometimes you have a really big impact and you don't know, and you don't know till later. And one place that is really good is if you're targeting a specific community, look at that community center. Look at the support systems they have. How can you work yourself into that? And that extends your reach a lot. And so I think working individually, locally is great. And what Heather and I are trying really hard to do is build bridges between those things so that information is shared with quality. But one thing before I forget, for sickle cell anemia, we know of a medical writing company, and the owner, she's a huge advocate for sickle cell. And what I can send you their information is they may be something to help you in your work as well, Faith.

SPEAKER_07 51:02

Yeah, I'll echo also a lot of what Patrick said. And I think one of the important things is don't try and reinvent the wheel if you want to be an advocate. There are a lot of organizations out there that are engaged in this work, and I would also encourage people to think local. And I think also stick with what you are comfortable with in terms of your lived experience. I'm certainly not qualified to be a sickle cell advocate, for example, but I have experiences with my own health conditions and with my own communities that I can speak to with a little bit more authority. As someone who is a former English professor and writing instructor, I think that stories are incredibly powerful. And the more of us who are sharing our stories, that resonates. And I can also really sympathize with faith, or sympathize maybe isn't the right word, but regarding building a platform, it takes time, right? And you may feel like you're only speaking to a couple of people at first, but remember that even if it is a very small scope of influence, you are still helping someone, hopefully, right? And I think that what we need to remember is that community building is incredibly powerful. And there are a lot of forces at work that I think don't want to see people form communities. And I think it's a powerful form of resistance. And it's something that we can all do. And we can all be part of communities. Maybe we can't all be leaders in the face of a movement, but we can become part of communities, and I think that's incredibly important.

SPEAKER_04 52:31

To tag on that point right there, the reinventing the wheel and the whole thing about resistance. This goes to nonprofits and NGOs as well, not only individuals, because I live in the city of Houston. In Houston, I've seen so many, and I'm gonna speak for the sickle cell organization, that's what I've seen. So many different groups pop up, like it's McDonald's chains. When we could all work together, collaborate, but some people are like, I'm gonna say big-headed. They're big-headed because they want their name. Oh, I did this, I like I got this recognition, I got this grant, I got they just want all the fame, the glory, everything when we could all work together as advocates, organizations, everything. So that was just a point I had to get out there.

SPEAKER_08 53:15

I think you make a great point about some people are definitely in it for the accolades, but sometimes those people also have to be engaged, right? Because they might be coming with resources that are needed. So that's a very tricky balance to strike.

SPEAKER_01 53:26

I think for this kind of work and probably any meaningful work, something that's more important than your passion or what you care about or your education or what you've done is listening. You need to learn how to listen to people, and that's where everything should always start. You don't have to agree with them, you don't have to do what they're doing. You just have to hear and see them. And when people know you hear and see them, then that is what I think is the first step in developing trust. And my thing is if I'm burned out, I'm not taking care of myself. So how am I qualified to go tell somebody else to take care of themselves? And so if I have burnout, I think that's on me, or else maybe my expectations are not reasonable. And the thing that I came to a long time ago was that it doesn't matter if I just help one person, just one, it was worth it. It was totally worth it. And, you know, I'm not gonna go save everybody, but could I help one person? That seems like an attainable goal.

SPEAKER_08 54:31

I think the listening aspect is incredibly important. And it's really weird. I didn't realize until I was in college, and I trained for two years to be a peer counselor, which is something that my university used to have because they had a lot of mental health issues, did not have access to healthcare providers, and so a student organization formed that became peer counselors. And what was wild about it is that I had taken all these like speech classes and debate classes and like all these writing classes, but like I realized it sounds really foolish when I say it, but no one had ever actually taught me how to listen well. So truly listen to somebody and not just like listening of, oh, what am I gonna say next? But actually listening and not even coming at it from saying, Oh, I understand, because I probably don't, right? I don't understand what the lived experience of many different diagnoses are, but saying, I hear you, I hear what you're saying, I hear your frustration, or I hear that you're burned out, or hear whatever it is, and then thinking about like how you can actually meaningfully contribute to that, I think is really important. And I think a lot of it too is sometimes just being there to listen for people who actually need to be heard, which I think is increasingly harder in a world where there's a lot of noise. What I'm taking away from all of this is a lot of people need to get their narratives out there, and we also really need to listen to those narratives to figure out where we can do better as scientists, as healthcare providers, as people who are interested in the health of our communities and of our world ultimately.

SPEAKER_02 55:45

Well said, Camille.

SPEAKER_08 55:46

Does anyone have anything else they want to add about patient advocacy, about like where patients access resources or anything like that they want to close out with?

SPEAKER_07 55:56

I will say one thing is if you are a family member or a support person for someone who is dealing with an illness, I think there's a couple of really basic things you can do to help. One of them is keeping track of their medications and what they're taking and for what conditions and at what times a day. Because I know personally when I go to the doctor and they ask me for my medications, like I know all my medications and I'm very got it memorized, got the doses, and they always say, Oh my gosh, this is so easy because usually people don't know, they can't remember. It's really simple, but that's something that you can do. And I think also doing things like keeping track of their medical records, making sure that if they're seeing specialists or multiple care providers, making sure that all of that information is easily accessible. And then if you are someone with a higher level of health literacy and you're trying to assist the people maybe in your family or in your community, doing a little bit of that translation work goes a long way. Teaching someone how to research their own health conditions, and especially if you can help differentiate between reliable and unreliable sources and show them places when there's a lot of resources that are trustworthy. State and local health departments have a lot of resources, and there's national resources like the CDC, and also a lot of the nonprofit organizations like the American Cancer Society or the American Heart Association, they have a lot of good patient education materials that you can use to help someone, you know, in your life that might be needing some of this distance.

SPEAKER_03 57:25

And my challenge to you incredible medical literature folk, especially Camille, who is about to branch out and dentists, scientists, you guys are amazing at what you do. Just doing what you guys can to like really put that information out there in ways that are really accessible to just the average everyday person. Because just personally, if I'm trying to, let's say, go through a document that the FDA puts out, oh my gosh, I can't even understand the things that they say. So, how is someone going to be able to understand that? Much less understand why the FDA does what they do, much less understand the processes that they go through and the steps that they go through in order to regulate these industries, and then also why they do that stuff on top of it's so important. And like you guys have said, like we've all said throughout this entire podcast, just building that trust back up between those large corporations or those large regulating bodies and the general population is so important because they were created for a reason, right? And there needs to be some kind of bridge that's built between that gap. There needs to be changes on both sides, but I think that you guys can be an incredible bridge. So, yeah, just keep doing your work and we appreciate you.

SPEAKER_08 58:44

All right. Thank you all so much for listening to this episode of Infectious Science. We owe a huge thank you to our guests on this episode, brilliant experts. We'll have to link add their LinkedIn so you can find these people and look at all the wonderful advocacy work they do. Just some brilliant minds joining us today, and we really appreciate Faith Patrick and Heather for joining us on this episode. And we hope you enjoyed it as well. Thanks for listening. And by listening, you're doing a small part of being involved in patient advocacy.

SPEAKER_05 59:10

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SPEAKER_00 59:21

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SPEAKER_00 59:39

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SPEAKER_08 59:46

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