Become a Creator today!Start creating today - Share your story with the world!
Start for free
00:00:00
00:00:01
DIY Medicine: Anna Wexler
25 Plays25 days ago
Season 4, Episode 7: Dr. Anna Wexler is a medical ethicist at the University of Pennsylvania who studies emerging technologies and do-it-yourself (DIY) medicine. Listen to Anna discuss common DIY medicine applications, the conditions under which DIY medicine movements emerge, and approaches for physicians to discuss DIY medicine with patients.
Recommended
Transcript
Introduction and Guest Welcome
00:00:09
Speaker
You're listening to The Wound Dresser, a podcast that uncovers the human side of healthcare. I'm your host, John Neary.
00:00:21
Speaker
My guest today is Dr. Anna Wexler. Dr. Wexler is an assistant professor in the Department of Medical Ethics and Health Policy at the Perlman School of Medicine at the University of Pennsylvania.
00:00:31
Speaker
She is the principal investigator of the Wexler Lab. which studies ethical, legal, and social issues surrounding emerging technology, with a particular focus on neurotechnology and do-it-yourself medicine.
00:00:44
Speaker
Dr. Anna Wexler, welcome to The Wound Dresser. Thank you for having me.
What is DIY Medicine?
00:00:49
Speaker
So you've done a lot of work in do-it-yourself health, crowdsourcing health. In the the bioethics world, how would you define do-it-yourself medicine?
00:00:59
Speaker
So there is no one definition of do-it-yourself medicine. And it's actually, i've also, I've written about this, but it's actually very interesting to think about like what do it yourself means um and and what that modifier it's like, so it's coming to modify a word, right? Doing it yourself.
00:01:18
Speaker
um But, you know, it it basically is saying that the normal way or the traditional way that we in our society practice medicine is not through doing it yourself. Right. We, we tend to go see a doctor. So the modifier do it yourself is sort of saying that this is something that outside of the traditional way, right outside of the, of the traditional professional context. So it's conveying that there is a professional context to medicine, um but also that this DIY do it yourself is sort of existing outside of that. um
00:01:48
Speaker
you know but But in general, i you know it's it's usually used, ah or the way I've defined it, as um it's in reference to people who practice medicine who either don't have the credentials to practice medicine, ah or and that's probably the most common use of the term. So people practicing medicine who don't have the credentials to practice medicine, um they're doing it outside of clinical settings.
Examples of DIY Medicine
00:02:10
Speaker
um Less commonly, although I've seen this, it's people, you know, who are credentialed, um but just practicing in sort of an unusual situation. So maybe there's, you know, um a physician ah ah gets a call, you know, an airplane who needs to jump in and help and doesn't have the right tools. So sort of DIYing it, DIYing medical care on the airplane. Right. So um but that would be a case where you'd have a professional ah that's outside of, you know, the typical clinical setting.
00:02:36
Speaker
And then so to to put some examples with that, I know you've written about diabetes care and hormone replacement therapy. Can you talk about like some of the prominent examples of DIY medicine, ah you know, that we see right now?
00:02:48
Speaker
Yeah. So the one that I've spent the most time studying is do-it-yourself brain stimulation. um And I did a whole PhD studying the do-it-yourself brain stimulation movement. um And those are people who um are mimicking a technique that scientists had been using in the laboratory. called transcranial direct current stimulation or TDCS to basically make an at-home brain stimulation device just using a nine volt battery. So not huge amounts of current, very low levels of current um and using it to self-treat depression, anxiety um and other mental health ah conditions. and And so, you know,
00:03:28
Speaker
Essentially, these were people you know who who didn't find their ah therapeutic options satisfactory, were still searching for options, had been reading that scientists were, um you know,
00:03:39
Speaker
experimenting with this technique called TDCS, transcranial direct current stimulation in laboratory settings. um And, you know, basically realized that they could easily create this device at home um and started to create the device on their own at home to
Innovations in Diabetes Care
00:03:54
Speaker
self-treat themselves. So essentially was because they couldn't have access to the device and they found out about a device that was sort of having some promising ah or seemed to be promising, right? Based based on the literature. um Other examples, right, are um do-it-yourself diabetes movements. So um those consist of sort of two things. So so one is patients who this was, want to say it's almost, it's about 10 years ago now, um who became frustrated um that their um continuous glucose monitors, actually parents who became frustrated that their children's continuous glucose monitors didn't have wireless functionality. So they'd send them off to school, but
00:04:32
Speaker
sort of felt like they should be able to get like in this day and age, 10 years ago, like we have, most things
DIY Fecal Microbiota Transplantation
00:04:37
Speaker
were wireless, right? Most digital devices had wireless capabilities. So they were frustrated. So they began to hack into their devices to add wireless capabilities. That's one, that's one example. And the other example was a ah movement um that came to be known as the open artificial, um open APS, open artificial pancreas um project, I believe I might be getting that last word wrong. Um,
00:05:00
Speaker
ah where ah ah individuals were connecting their continuous um glucose monitors with insulin pumps to create a an artificial pancreas, basically. So to create a closed loop artificial pancreas. And that was a case too, where they felt like,
00:05:16
Speaker
that functionality should exist, you know, in in their devices, but there was no device yet on the market that could do that. um And so they sort of just hacked into them on on their own um at home. um So those are, and I'll give you one more example. um Another example is the do-it-yourself fecal microbiota movement, um DIY FMT, where you know I'd say similar to the do-it-yourself brain stimulation movement, and these were people who were um struggling with a condition. In this case, it was treatment-resistant C. diff, ah had been reading about a therapy and that was sort of experimental, still emerging in the literature called Fecal, you know, FMT, fecal microbiota transplant, realized that they could do this procedure at home. So they couldn't access it through their local health care systems um and ah realized they could do it on themselves at home. So they began taking stool from family members or friends and then transplanting it into themselves.
COVID-19 DIY Movements
00:06:17
Speaker
um
00:06:18
Speaker
and sort of self treating in that fashion. So those are just three, I mean, we we can go through more, but those are just three, I think, very interesting examples of do it yourself medicine. Do you feel like with with everything that happened during COVID, it kind of had like a DIY flavor with, you know, the hydroxychloroquine and, you know, people were kind of doing their own thing at home. did just did that Does that fall into the DIY bucket for you or or not so much?
00:06:44
Speaker
Absolutely. I actually had a whole and NSF project to study the DIY, what people were doing in terms of DIY during COVID and for COVID specifically. yeah.
00:06:55
Speaker
so you know, the hydroxychloroquine is kind of an interesting situation because that's where people are hearing about something um and then, you know, trying it at home. um I think what what differentiates the other DIY medicine movements that I just mentioned is that, you know, the hydroxychloroquine didn't have sort of the the stamp of approval by mainstream science.
00:07:18
Speaker
um In the cases i mentioned, it was cases of legitimate therapy, at least the DIY FMT and the DIY brain stimulation. You have legitimate therapies, right, that are just kind of early and experimental, um but they are easy to create at home.
00:07:31
Speaker
And so, or relatively, you know, it's doable, let's say. um And so patients would be accessing them, whereas the hydroxychloroquine, that attracted sort of people with more, i would say, distrust of scientific institutions. um So my sense, and I haven't studied, you know, that population specifically, but but my sense is those folks probably had more distrust of science, where in the other movements, there is just a very high trust um in science, but there was more frustration at the pace that therapies get to them.
00:08:04
Speaker
um But other I'll just say other DIY COVID. So there was a lot of interesting things going on during COVID DIY. So there are people um doing DIY COVID nasal vaccines, people working on different kinds of DIY diagnostics. um And so there there was absolutely, i would say, a DIY medicine movement in that, you know, think of DIY medicine as DIY medical movements as arising in places where, you know, people are frustrated with the the state of current therapeutics. In this case, it was the state of a ah preventative, right? There was no vaccine on the market um and they were just willing to sort of try to do what they could to create that. And so there were, you know, biohackers and little collectives that sprung up and um did try to create these vaccines. And and actually um at least one collective called RadVac um actually published instructions and posted them online about how to create an at-home DIY.
00:08:58
Speaker
vaccine. And these these were um from individuals affiliated with scientific institutions. in In some ways, there was like that distrust of the the scientific institutions, but weren't like the people promoting like the the like use of hydroxychloroquine. ah Wasn't that weren't they also like trying to cite like certain scientific publications that weren't really applicable, but they were kind of like trying to massage that to be applicable and in in the the new COVID
Key Ingredients for DIY Movements
00:09:26
Speaker
pandemic? Is that right or not really?
00:09:29
Speaker
I would say I don't I don't know specifically, um but it's my recollection that that sort of the mainstream view is that one should not take hydroxychloroquine at home.
00:09:43
Speaker
Like the Fauci view, he would not be somebody who is encouraged in that practice, let's say. but Certainly the people who were promoting it may have tried to marshal support from other, you know, in any way that they could.
00:09:56
Speaker
But it I don't think it was sort of like the accepted mainstream thing at the time. And then I guess the other, ah you know, last one we we can touch on in terms of DIY health, though, um abortion, I think with like the ongoing ah changing policies,
00:10:14
Speaker
climate around that or country, are there more, ah a lot more instances of DIY, uh, abortions? So I don't have data on this, but it is a very interesting area. And so, um,
00:10:27
Speaker
I have one paper that I wrote where I tried to think about, you know looking back across DIY movements, like what are the key ingredients that kind of set the stage for DIY medical movements to arise? And if we have an understanding of those, maybe that can allow us to predict where, um other DIY medical movements, um, can arise in the future. so um I had four ingredients. Let me see if I remember them. So, so one was, um,
Rise of DIY Abortion
00:10:54
Speaker
I think the first was just, um, just having a place to communicate rapidly in an online setting. And that's basically just like the internet, which we, which we have, um,
00:11:03
Speaker
A lot of these movements are centered on online forums, right? So they're places where people can exchange information. They share what they're doing. They get feedback in real time. You know, another person will say, oh, I used these parameters when I dosed myself or, you know, this is how I got the stool for the FMT and this is the...
00:11:22
Speaker
ah you know, how I blended it, right? So they'll share their like details of their practices online. So so having that online forum or online way to communicate has been really key. um Other key factor um is, yeah, population of individuals who are frustrated, right?
00:11:38
Speaker
Which, you know you know, suffering from a disease, a condition for which either there isn't a an effective therapeutic, ah or maybe there is one, but they can't access it.
00:11:48
Speaker
um And sometimes it's not the individuals themselves, but sometimes it's you know their loved ones right who are trying to help help these individuals. um An access barrier is another key feature of any DIY medical movement, right? So people can't access the therapy. So whether it's the therapy or device, you know, isn't approved, it's still experimental. That's one kind of access barrier.
00:12:12
Speaker
Might be too costly. um There might be geographical access barriers. So in early stages of FMT, it was only being done in a few hospitals um and
Medical Market Failures and DIY Solutions
00:12:21
Speaker
it wasn't widely available. um Or it could be that, you know, a group of patients feels like like in the DIY diabetes context um that there should be a certain functionality to advice.
00:12:32
Speaker
But but there isn't. Right. So it's that innovations haven't come. um But the other key. Right. So so there's a lot of settings where we have those three key factors. Right. Like frustrated patients who can't get access to the therapies they want. I mean, or that they need. Right. That describes.
00:12:47
Speaker
a whole big swath of people, right? But the fourth key factor for a DIY medical movement is that the the therapeutic is relatively easy to access or create at home. It's something that's doable, right? So ah if I need, um let's say, you know, a pharmaceutical drug that a company is developing, right? I can't make that drug, um you know, at home, right? And it's very hard for me to get access to it. But for something like stool or, you know, a battery powered stimulation device, those are things that are relatively easy for one to access or the ways that people are sort of hacking into their DIY diabetes devices. They were using devices that were available on the market. Right. So so that fourth ingredient. Right. Is that it's right that there's something that people can actually relatively easily get access to.
Challenges in Crowdsourced Health
00:13:39
Speaker
So when you have those four ingredients in mind, right, coming back to your initial question, which was, know, about abortion, um that's that's exactly one place where, especially, you know, with, you know, what's happened in recent years with laws starting to restrict the availability of abortion, um right? It's, you have the same ingredients, right? People want some sort of, you know, medical procedure, abortion that they can't access. um They're probably very frustrated and probably very desperate in some cases um to access that procedure.
00:14:13
Speaker
And there might be a way for them to, you know, do an abortion by themselves at home using, you know, turning to the Internet and online forums to share their practices. And um so I haven't followed this, but there are. um you know, I haven't followed this closely in terms of data gathering, um but there are methods that are shared online. I think, i don't know if it's using coat hangers or something like it's whatever version of like today's coat hanger that we have. um But, but essentially it's something like that, right. Where, where you can do it with basic, like sort of physical um or manual methods.
00:14:45
Speaker
um So that absolutely would be a case and in my view
Physician Guidance on DIY FMT
00:14:49
Speaker
of DIY medicine. Yeah. When you talk about all those factors, it kind of makes me think about like, it almost like in economics terms, right? Like you have like market failures where like the the existing status quo doesn't really like meet the needs of consumers or like participants in in the system. So they kind of look elsewhere. um I could also see how like the ease of creation thing could just be like ah like a real ah in for a lot of, you know, i
00:15:17
Speaker
for lack of a better word, like scammers to scam people and say like, you could easily do this at home or something. you Do you see a lot of kind of people get sucked sucked into like sort of these ah DIY rabbit holes because they're they're they're convinced that they can do something at home easily when in reality that the treatments are are far more complicated?
00:15:36
Speaker
I would say not so much because scamming, and so scamming is usually done by people who have something to sell, right? um so Oh yeah, I guess that's a good point. Yeah, so scammers have a product that they want to sell um and they want to make some money from that product. um So in the case of do-it-yourself brain stimulation, I don't know if there were scammers, but what happened sort of in the second generation, you know you know, so you could either make the device on your own at home Or, you know, if you didn't want to, like, actually build a circuit board and put the wires together and do some soldering, ah you could just buy a device. Like some some entrepreneurial individual started selling devices online.
00:16:17
Speaker
So you could just buy a device, but you still have to figure out where to put the electrodes. It still required um some knowledge. You know, that was sort of like people selling what they called TDCS device kits. So, so there does often arise a kind of market for tools or products surrounding DIY ah movements, not always.
00:16:38
Speaker
um But for example, in the DIY diabetes context, right, it was only this like older generation of continuous glucose monitor that was able to be hacked or maybe maybe it was the insulin pump that was the older generation that was able to be hacked. So so people had to go on eBay and try to like find these older generation models. So it's all to say that sometimes like the tools themselves are commodities that can be sold. Right. The tools that enable certain kinds of DIY medicine are sold. I haven't seen a whole lot of scamming because usually to do DIY medicine, you have to be, i don't know, you have to have knowledge. You have to have sort of some sort of know how, right. It's not everybody who's going you know, you have to be a little scrappy, maybe a little scientifically inclined. Um, so i would say it's not a huge area, um, that I've seen in terms
Historical Context of Medical Credentialing
00:17:27
Speaker
of scams.
00:17:27
Speaker
Um, But I want to come back to your first comment, which is market about market failure, which I think is a really interesting one because that's exactly where we see DIY movements arise, right? Where there's some kind of like failure in the system or, you know, people are falling, patients are just falling through the cracks, right? There isn't there isn't an effective therapy for them and people...
00:17:50
Speaker
are desperate and and you know rightly so. right If you were suffering from treatment resistance, you deaf i mean um or if one was, let's just say, right i mean it sounds absolutely miserable and horrible. And so I completely understand how one would be desperate to try absolutely anything. And even more so, especially if there was a therapy that in early scientific studies right seemed to be promising.
00:18:14
Speaker
Um, so, so it's understandable in some sense. Like I, I understand the, the drive to do it. And honestly, if I was in the situation that some of these people were in, I'd probably, ah you know, I wouldn't be, I might do the same thing myself.
00:18:29
Speaker
I haven't been in that situation, but you know, um, I, I understand it.
Integrative Health and Traditional Practices
00:18:34
Speaker
Yeah. and what you just said made me think like, you, do you feel like these, another, maybe even criteria for these, uh, DIY movements is that they have to be very like,
00:18:44
Speaker
popular conditions that people have that they can't get the treatment for? Or is are these communities even cropping up amongst individuals like who have, you know, there's maybe like 100 people in the whole country who have this condition versus, you know, diabetes where thousands and millions of people have it?
00:19:01
Speaker
I think probably just because there are there are more therapies available for broader, kind of you know, there's there's very few therapies that exist on the market for patients with rare or ultra rare diseases also due to market incentives, right? There's often not an incentive for companies to um invest in a therapeutic that might only, you know, that might only capture such a small share of of a population, right? Where the returns are just, even if you have the most successful therapy, your returns, you know, are just going to be low. So there's often, um you know, not that same,
00:19:41
Speaker
ah there's not, they're often not the existence of a therapy, but at the by the same token, right, you might have people coming together online on these smaller um forums for, let's say, rare diseases, sharing their practices, right, because the knowledge that they have in this, in these small groups might outpace the knowledge that ah physicians have, right, that any single physician has um about, you know, the disease itself. So there's a lot of knowledge sharing, I would say, that goes on in those groups, which, you know, depending on how you define DIY medicine, if DIY medicine is just kind of sharing knowledge practices, ah then that is a kind of DIY. If they're sort of obtaining knowledge from this small group and actually, i don't
Engaging with Alternative Medical Views
00:20:28
Speaker
know,
00:20:28
Speaker
maybe doing some light intervention. maybe Maybe they're not sort of pharmaceutical-based interventions or device-based and interventions, but maybe they're, i don't know, modifying their daily practices in some way.
00:20:40
Speaker
That could be a form of DIY medicine. Tangential to this this whole world of DIY medicine that we've been talking about, there's sort of like a DIY research world, as I kind of understand. like You have like crowdsourced health. Can you talk about like what that is and if if there are any mechanisms that kind of quality control it.
00:21:02
Speaker
I haven't seen the term crowdsource health used lately. it became popular, want to say 10 years ago, maybe 15 years ago, where people were saying, well, if we have all these people that can come together and provide information. And again, 15 years ago, we're still sort of new in terms of having online forums and you know places, social media and outlets where people with a similar condition can get together and share their experiences. So it's still sort of, you know, we had the internet and we had listservs, but it, you know, we get social media, we get Facebook and what, around 2006, start
Reflections on Integrative Health and Mainstream Medicine
00:21:39
Speaker
to get different groups, um you know,
00:21:41
Speaker
have Reddit forums, there was Yahoo groups, I think that was one of the earlier sort of listservs. um So you get patients coming together, really united around a single condition. um There have been a few cases. So I think one was one was around, I believe it was a patient in Italy who I think maybe had seen some promising results for a specific medication for ALS for a phase one trial.
00:22:12
Speaker
and encouraged other people to take that medication. and I think somehow they were able to get access to it. I don't i don't know how. um And those patients reported back online. So that was sort of one way in which patients were able to collectively um self-experiment, I guess, in some way. And so the results of that study were published, I think it was a 2010 article, not by the patient who unfortunately passed away um
00:22:44
Speaker
I forget the author's name, um but but those results were published. I feel like we haven't seen so much of that in the years since then. But in in theory, it's a very interesting idea, right, that you have groups of patients, you have all this real world data. And if it can be kind of standardized in some way, which is really tricky because you need the infrastructure um to do that. And you have to sort of have patients adhere to, you know, a certain kind of dosing. um But in theory, right, this could be, it's it's a really interesting way to um do research.
00:23:17
Speaker
But in practice, I think, you know, there's there's a lot of just practical challenges with like, Who's analyzing the data? of Who's taking the lead? Right. Does anybody have does anybody in the group understand experimental design? Right. Like how how how does one go from sort of the theoretical interest in the idea to actually making it a legible study? And I think that's where we've seen ah yeah the follow through hasn't quite been there.
00:23:42
Speaker
Yeah. When first i I hadn't heard, ah you know, about crowdsource health until I, you know, read some of the papers you put out and yeah, it, it I guess it, it basically, it's, it's a very, it parallels the idea of, you know, crowdsource code where people are writing code and like kind of collectively joining together to do these like projects.
00:23:59
Speaker
And if there's some way, i don't know, to to me, it kind of seems like if you could harness the power of like smartwatches or different things where you could, in a standardized way, collect the data, like that you could probably, you know and you know pennies on the dollar, like conduct these studies and in a more efficient way.
00:24:17
Speaker
I agree. In theory, yes. But in practice, to get the people to do the follow through that would be needed to move it beyond... um anec you know They say anecdotal data is anecdata, right? so to move it beyond anecdata into ah you know something that could be published in a scientific study or that would be legible for for clinicians and scientists. Like the the practical aspect of getting that off the ground has been challenging.
00:24:46
Speaker
i'd see I'd say where we've seen the the best examples of that, and I don't know if I'd call it crowdsourcing, maybe maybe it's crowdsourcing, but it's it's in the DIY diabetes movement. They're much more organized.
00:24:58
Speaker
um They have a chronic condition, which I think contributes to it. So, so you know, you could imagine that somebody with um treatment and resistance C. diff, once they get better, they have no need to sort of be part of a see diff community anymore, right? Online or part of an online FMT community.
00:25:18
Speaker
ah Patients with a lifelong chronic condition are very much, ah you know, it's part of their identity, right? Who they are. um And so they stick around on these online communities for longer.
00:25:30
Speaker
um and ah some of the patient advocacy leaders, the people who have been involved, you know, in in these movements are dedicated. Some of them are scientists. So we've seen a lot more in terms of publications of the community come out from there. And and my my guess is that it's because it's a chronic condition that becomes part of one's identity, or at least that has to play some kind of role, I think.
00:25:55
Speaker
So there are like folks who have, you know, within this like community, you have the condition that are, I guess, emotionally attached to the community that are are kind of taking the lead and like writing manuscripts for, on behalf of the whole community.
00:26:09
Speaker
Yeah. Or organizing surveys of the community. I think there was surveys of people who were using the open APS, um, system and Donna Lewis is, has been one of the leaders there. And, um,
00:26:24
Speaker
And she's also collaborated with scientists um as well. So having those connections and collaborations really helps in sort of taking that step sort of into the publishing world and into making and into designing research that, you know, the medical world or the traditional scientific and medical world will, will you know, accept, let's say, or will see as, you know, good science or solid science.
00:26:51
Speaker
So would you say in in general, like scientific journals and I guess even the medical professional in general, like have they, when, when you talk about DIY and crowdsourcing, are they kind of like, you know, we want nothing to do with it or we want to figure out how to, you know, collaborate with it. would you say? Like, how is that kind of dynamic been?
00:27:09
Speaker
I think they're, they they don't know what to do with it. i would say is it's like, okay, it's there. Um, So what does it mean for me and for my practice?
00:27:20
Speaker
um And we actually did one interesting study where we asked physicians who are infectious disease docs and gastroenterologists um who had some kind of experience with do-it-yourself MT. And by that, I mean, they were listed.
00:27:37
Speaker
i think we found, trying to remember our our recruitment methods. I think there, so there was these um websites for do, at you know, at home FMT and they, these, these patients would compile lists of doctors were sort of sympathetic to FMT. um And I think we recruited um the physicians based on those lists to my recollection. um But we were very interested in how physicians responded to requests for DIY FMT, right? Do do physicians say, you know, like,
00:28:06
Speaker
No, you know, so so when a patient comes to a doctor and says, you know, um I know you can't give this to me, but can you advise me on how to do it safely? Or, you know, you won't give me you won't because you can get FMT in the clinic as well. So, you know, if you won't give it to me, um you know, I'm going to go ahead and I'm just going to do this anyway. Like how do physicians respond um to those requests? And so how how do they think through? Like, do they provide counsel to these patients or do they just shut it down and say, like, I'm not talking to you. Don't do it. This is dangerous. This is stupid.
00:28:37
Speaker
um And we found that most um did not provide guidance to patients. But if the patient came and said, um you know, I'm just going to do this anyway.
00:28:48
Speaker
um Can you help me in terms of making it safer? Because I'm i'm doing this anyway. Then they might provide some harm reduction strategies. So like if you're going to do it anyway, you know, you should really get the stool tested here, you know, or, you know, look,
00:29:04
Speaker
at this place to see you know of the potential risks um so so they employed kind of a harm reduction approach in our sample which wasn't very big i think it was maybe 20 physicians um and i think the inclusion criteria was that they had to have been approached uh by a di you know by somebody uh requesting you know uh an fmt who they didn't feel was eligible for an fmt um but I think there was only one who actively provided guidance um in the sense that he thought it was an enough. This physician thought it was an effective therapeutic um and really felt for his patients that were suffering. And he felt like this is, and and there's data. I mean, this, the early studies on FMT for treatment resistance, C diff showed these amazing results. So, you know, in a sense, he's not wrong. Right. um But he would help people do it at home because he was just, he was at the mindset I'm, i'm you know,
00:29:58
Speaker
i am I just am going to help these patients who are suffering and this is an effective therapeutic and I'm just going to help them get better. So anyway, it's so so that's just one case where there's been some interaction interaction between physicians and the DIY community that I've studied in some fashion.
00:30:16
Speaker
Yeah, I think I think all of our discussions so far just kind of point to a broader question of like who can do research, who could administer medical care, like what are the credentials you need to do that? and i think, you know, obviously on one hand, you know, a lot of our systems are in place to keep people safe and to do a lot of things. But I think for a lot of patients and, ah you know, people interested in in treating these conditions where we can't get care, and they feel like they're like research is only kind of coming from the ivory tower, right? And that, you need you know, it it seems so distant and far away from from their everyday life.
00:30:51
Speaker
So I don't know, do you yeah do you kind of reflect on like, you know, what it means to be credentialed to do research and what it means to be credentialed to to to give medical care? Yeah, absolutely. So I teach a class called Medicine on the Fringes. um And in the first class, we go through the history of the professionalization of medicine. So it, you know, it is the case now that the the sort of norm in Philadelphia, let's say our, our, my, the society in which I live in Philadelphia, which is a Western, you know, country, um you know, high income country, um, is to go see a physician who is credentialed. Like if I have a serious health problem, right. That, that is, um, the norm in, in my community, in my society. Um, that wasn't always the norm, right. So medicine only became really strictly professionalized in the late eighteen hundreds and um,
00:31:48
Speaker
kind of even the early nineteen hundreds So, you know, ah before that, medicine was seen as something that people could just do at home on their own. And so there are books that you can buy in the 1700s,
00:32:01
Speaker
you know, do-it-yourself medicine, all these guides. I forget the names of them right now, but ah they had, you know, kind kind of quaint names. um ah but But basically it home treatment guides, right? So medicine wasn't something that was in sort of this professional realm. It was seen as um something that anybody could do at home. um And later you had physicians with all kinds of different kinds of training and there was a lot of variability in the credentialing. And and again, late 1800s, early 1900s is when largely due to lobbying efforts of the American Medical Association, um
00:32:35
Speaker
you know, there was sort of more of a um ah professionalization that took hold. And, you know, ah again, largely because of the AMA, they said, you know, this is what a physician is. This is what credentialing looks like. This is what medical education should look like. And and they wanted to sort of ah draw a line, draw boundaries between, you know, professionalized medicine and the quacks and ah these alternative medical practitioners that were also kind of on the market. um But again, when you think of this with this big historical lens, you know, um actually what we have in recent history becomes very unique in that medicine is professionalized. So so, yeah, so it's it's um it's absolutely a reaction to the way things are now. um
00:33:17
Speaker
And the way things are now is not the way they have to be and not the way. that they always have been. So, so that's how I start my class. Um, and when we think a lot about boundaries between, yeah, what's considered mainstream or traditional, what's not traditional because those boundary lines I think are what makes it all very interesting. Right. Um, and that gatekeeping that you mentioned that gatekeeping wasn't always there.
00:33:39
Speaker
Right. Um, The gatekeeping authority, physicians have a lot of gatekeeping authority, right? They write prescriptions. um They're the only ones in most states that can write prescriptions. That's a lot of authority, right? That's a huge amount of gatekeeping um authority. um And again, wasn't always like that. um And so there's a reaction to sort of the role ah that physicians play in our society, right? Where research is done, reaction, distrust of institutions. So there's all these things that sort of, ah you know, play into this, you know, into do-it-yourself medicine and people trying to do things outside of this professional ah system and professional institutions.
00:34:18
Speaker
Yeah. So i I feel like, yeah, as we've kind of alluded to, there is like this growing distrust, I think, of the medical profession and like, I don't know, as somebody who's, you know, you know, trying to do a ah career in professional medicine, it's so it's sort of like, how do i how do I handle all that kind of growing distrust? Do I sort of try and sympathize with it and understand it? Or do I kind of, you know, that push it to the side or it just seems like you have this growing, ah you know, group of like health influencers and people who are sowing that distrust and and and challenging that social norm that you mentioned before and of like,
00:34:57
Speaker
going to a doctor to to work on your health? Yeah. um So I think that's a great question. And I could tell you, I don't know if I know the right answer, but I can tell you what I think might be the wrong answer, which is um not to push it away and ignore it. And I can give you one example, which is what happened um during the COVID-19 vaccine development, right? Where I think the mainstream medical establishment, it just like tends to ignore and has ignored the anti-vaxxers, right? Just kind of does that push it out, like, just don't think about them, don't engage, they're just there, right? And so big push to have the vaccine, really very little thought to how the public would receive the vaccine.
00:35:39
Speaker
And so i think the mainstream medical establishment was really caught off guard when suddenly, right, against all odds, they have this, you know, operation warp speed, they have the vaccine in record time, this amazing scientific advance.
00:35:52
Speaker
roll it out and then people don't want to take it. I mean, of course, a lot of people did take it, but you know, there was all this pushback against getting the vaccine. And I think in, in, in my interpretation, my view, it was largely because there wasn't enough attention to sort of the, the alternative to the fringe, to the people who, well, actually in today's society, they're not alternative and they're not fringe anymore because those exact people who we thought of alternative as alternative and fringe maybe two years ago,
00:36:21
Speaker
are now sort of leading our, you know, government medical institutions. c um yes um But, but, you know, they pushed it out of the way and and they didn't acknowledge it. And so I think that's the wrong approach. I think,
00:36:35
Speaker
better awareness that this is that these movements are going on, that people are getting a lot of information online, that they're going to be Googling, they're going to be using ChatGPT or whatever, LLM is is popular at the moment. um They're going to be getting all other and you know all kinds of information from other sources. and And actually, I think that needs to be more taught in medical schools. I think that needs to be more of a subject.
00:37:00
Speaker
And I think, you know, an openness to physicians to being able to engage with that and acknowledge it and realize it and being taught on how to deal with it, which I don't think is, I still don't think the medical establishment has really or grappled with that sufficiently. Because I think it, I think the move is just, oh, just push it away. Yeah, it's sort of like,
00:37:22
Speaker
you're, you're, if you like engage, you're worried about kind of just getting like sucked into it and being kind of taken away from a lot of the things that are standard of care, but you kind of need to like, you know, play both angles and like understand like evidence-based medicine and how it exists, but also like the way people are making health decisions now. And, uh, I don't know. I think,
00:37:46
Speaker
I'll say one other thing to that, which is I think it's really important to even understand the anti-vaccine literature and stories that the and that that people are being exposed to. So, you know, now most medical, like they will they will not play you an anti-vaccine film because it's just not part of the curriculum. I actually think it's a really important thing to do. and I show a trailer for this um film in my class. I think it's called Vaxxed is the film, but it was a an anti-vax film that came out.
00:38:16
Speaker
ah I don't know, a number of years ago. um But I think it's important to see the, I see what people are being exposed to, how they're forming their opinions, their thoughts, what they're engaging with. And I think the medical establishment has an opportunity to engage back with that. Right. But right now it's, it's more of a dismissal than a, you know, engagement and then pushback.
00:38:38
Speaker
I think the other way I've conceptualized it too, is like taking the stance of like integrative health, which I think, kind of gets often lumped with ah alternative medicine, but like in reality, it's sort of taking like the best of all different schools of thought when you think about health and healthcare. care And i don't know, I think it's ah it's a, it's like a growing field within like the allopathic medicine community, but it's also still sort of, i think those, a lot of those folks are probably the ones who are are most interested in listening to some of the narratives that you're saying, but also, you know, value some of the, you know, ah you know,
00:39:14
Speaker
existing guardrails in medicine as well. Yeah. And I think those people are more open to seeing the weaknesses in the mainstream medical institution, right? So, you know, mainstream medicine doesn't have all the answers. You know, physicians are not perfectly rational people who go around operating on what They know from the latest evidence. i mean, that's that's what a lot of people like to think that medicine is like, but it's cultural, right? It's influenced by practices. it's You're influenced by what you, a physician is influenced by by what they've seen, by what their supervisors, you know, ah or mentors or attending, you know, have showed them the right way. But but a lot of people, you know, think that, you know, physicians are these perfectly rational people making decisions on the best available
00:40:03
Speaker
you know, the latest journal articles, you know, at the time. And there's, but, you know, medicine is not like that. There's a lot of disagreement. ah You know, there's there's cultural practices that become ingrained without a lot of good evidence behind it. And they just become the thing that people do. And that's what's taught. But nobody ever really kind of looks back is like, is there good evidence behind this practice that that we do? ah And so, you know, there are real weaknesses in the medical establishment. And so I think one of the the benefits or or one of the perspectives that integrative health brings is ah is a willingness to say like, maybe the mainstream doesn't have all the answers, right? All these sort of like evidence-based, we think are evidence-based, maybe the answer's are not there. And maybe there's other stuff, right? From elsewhere that we can pull in in the interest of helping patients and use to our advantage. So I think that's one real benefit of sort of that integrative approach.
00:40:55
Speaker
Yeah. Yeah. As a trainee, I've noticed like the most honest physicians are quite often like explicitly say like a lot of what we do in medicine isn't evidence based. And anyone who tells you otherwise is lying, which it it kind of adds a degree of humility to all of it that like, you know, if we were to actually have studies for every single micro movement we made within a clinical encounter, like,
00:41:17
Speaker
yeah it would it It just wouldn't be possible. So like, I think, I don't know, it's it's it's nice to kind of hear that from a lot of, you know, folks who have been in the profession for a while. Yeah. And I would say I didn't even I i was not even aware this till recently. It's something I teach my students.
00:41:32
Speaker
I teach in a master of bioethics program at Penn. And a lot of my students come in and they have this view of medicine. And part of what I do is, is try to dismantle it, right? You know, the physicians in the white coat, you know, it it is the sort of general public perception that this is,
00:41:49
Speaker
you know, this is what a physician is, if a physician does, how a physician acts, ah you know, but, but physicians are human people, right? They live in a social and cultural context. That's where they operate on. That's how they learn. And so, um yeah, that's, that's what I try to convey to my students throughout, throughout the class. And I try to push them both to sort of question the alternative views, but also to question the mainstream medical views as well.
00:42:17
Speaker
With that, it's ah time for a lightning round, series of rapid fire questions that tell us more about you. Great. um So what's one new DIY trend you would like to explore more?
00:42:32
Speaker
Probably the DIY abortion. I haven't had time to to ah dig into that, but I think that would be really interesting. And DIY hormone replacement therapy, I'll just say something we haven't talked about, but I've seen more and more writing on that.
00:42:46
Speaker
What's your favorite springtime activity? Biking and boating. where Do you have any favorite spots for that? Beltsville Lake in the Poconos. I have an inflatable stand-up paddleboard, and I love to go out on it.
00:43:01
Speaker
and And for biking, I recommend for any any local folks in in the Philly or surrounding area, there's an amazing bike path um on the Lehigh Gorge starting from Jim Thorpe. it's It's really beautiful.
00:43:15
Speaker
You mentioned that you are professor at Penn. So where is your favorite place to hang out in University City? Good question. I have three small children, so i don't get to hang out ah as much as I would like. um But I would say one one place where professors often go around Penn is White Dog. So that that just ends up being the place where we take faculty, ah you know, other other visiting faculty or students out for lunch or dinner. So that's kind of a nice place.
00:43:45
Speaker
What's your ideal Sunday morning? Ideal Sunday morning. um Well, my husband and I have a small cabin in the Poconos. And so the ideal would be we'd we'd be out there drinking coffee and sort of overlooking our deck, which is um in the forest. And we have a little pond with fish and maybe going to the pond and seeing what the fish are up to.
00:44:08
Speaker
That sounds fantastic. And lastly, what's one change you'd like to see in the DIY health movement? yeah That's a good question. um I would say um for professional societies to ah sort of what we talked about earlier for professional societies to develop either do a better job of, of you know, ah communicating with the DIY community and for medical, for sort of on the medical education side for it to be realized as something that needs to be ah taught to, ah you know, young physicians, physicians in training, ah you know, more education about how to how to navigate some of the difficult questions um that come up with DIY medicine.
00:44:58
Speaker
Anna Wexler, thanks so much for joining The Wound Dresser. Thanks so much. it was really fun chatting.
00:45:12
Speaker
Thanks for listening to The Wound Dresser. Until next time, I'm your host, John Neary. Be well.