Episode #43: The Future of Digital Health: Part 1 (transcript)
Quinn: Welcome to Important, Not Important. My name is Quinn Emmett.
Brian: And my name is Brian Colbert Kennedy.
Quinn: And today is Episode 43. Today's topic Brian, Teddy ... Teddy, you with us? Yep. The future of digital health, Brian, seems to be pretty colorful and pretty female.
Brian: Thank god!
Quinn: Why isn't everything? But seriously, we're digging into the future of digital health, which is going better in some places than others, but man, it's pretty fucking cool. Our guests, plural today.
Quinn: Yep. That's what plural means.
Brian: Got it.
Quinn: Coming at you from way across the pond. Dr. Indra Joshi and almost-doctor, Maxine Mackintosh. What?
Brian: This is reminiscent of Episode 1 of this podcast. I believe we had Dr. Heidi Steltzer and almost-doctor-
Quinn: Anne Christianson.
Brian: Anne Christianson, yeah.
Quinn: We gotta check and see how that's going.
Brian: Pretty awesome.
Quinn: Anyways, Dr. Joshi is the clinical lead for NHS England's Digital Experience Programme, with an E at the end. She's an expedition medic, she's a mom, and she's the clinical director. Whew, pulling it together today.
Brian: You got this.
Quinn: Of One HealthTech, a network these ladies co-founded, which champions and supports under-represented groups in health innovations, primarily ladies.
Quinn: Maxine is pursuing her PhD in Neuroinformatics at The Alan Turing Institute, so, she's a slouch, where she's working on the intersection of data science and dementia. She's also, as mentioned, a founding member of One HealthTech.
Brian: Mm-hmm (affirmative).
Quinn: Brian, you got any experience with dementia? Anybody in your family?
Brian: No, actually. Nobody in my super close knit, small group. What do you call that? What's it called when it's the-
Quinn: Nuclear family?
Brian: Nuclear family.
Quinn: Yeah, nuclear.
Quinn: Nope, please don't do that. Nuclear family.
Brian: I'm just joking.
Quinn: Well, let me tell you, all my grandparents had it.
Quinn: It's the darkness. It is fucked up for everybody.
Brian: Yeah, yeah, I can't ...
Quinn: Obviously, she's got a long way to go and there's a number of wonderful people working on it. I'm clearly now just cheering for her, but man, if somebody could start to make some progress on that.
Brian: Yeah, wouldn't that be incredible? We've shared some stuff in the newsletter and just in general across our social platform about certain progresses that are made and stuff. It's very exciting to think that it could one day not be a thing anymore.
Brian: Yeah, these women are looking forward and doing everything they can to raise up the next generation of lady scientists and help professionals. We dig into digital health with them, where the UK has succeeded and the US has failed, and why. We say the word blockchain once, I think.
Quinn: Right, which is how many times Teddy barked, yep.
Brian: Teddy did bark once during this episode.
Quinn: It was very strange.
Brian: Which is strange.
Quinn: And we made fun of you for having two coffees.
Brian: Yeah, I don't really think you made fun of me. You just said-
Quinn: It's enough. Everybody knows. It's enough.
Brian: Yep, it is.
Quinn: Yeah, Teddy barked. That was really weird. Doesn't bark when he needs to go out, check; doesn't bark when there's an earthquake. We watched that go down, didn't even wake up.
Quinn: So no idea why.
Brian: He was literally just sitting here, quietly, comfortably, and barked.
Quinn: Yep, anyways.
Quinn: On that note, let's go do it.
Brian: Let's talk to the ladies!
Quinn: Our guests today are Indra Joshi and Maxine Mackintosh. Together, we're going to discuss the future of digital health, which seems to be pretty colorful and female, and this is another conversation in our fun series, "Should white guys go away forever?" Indra and Maxine, welcome.
Indra Joshi: Hey guys! Thanks for having us.
Max. Mackintosh: Thanks very much for having us. That's a really good name.
Brian: We're very, very happy to have you here. Let us get going with just a quick introduction of you. Who are you and what do you ladies do?
Max. Mackintosh: Indra, go for it.
Indra Joshi: Hi guys. My name is Indra, as said. I am a Doctor by trade, so I work in what we call an Accident and Emergency, but I think what you guys call is the ER, the Emergency Room. That is my sort of by night profession when I'm Batgirl. During the day, I work for our central government body called NHS England overseeing some of the digital health programs.
Quinn: Okay, very cool. Awesome, nothing like having some free time on your schedule.
Brian: Very impressive. Thank you for translating the words for us from British to English.
Quinn: Mm-hmm (affirmative). Maxine, what's your story?
Max. Mackintosh: My name's Maxine. I am currently doing a PhD at somewhere called The Alan Turing Institute, which is the UK's National Data Science and AI institute. My work looks at mining medical records, probably the most analogous system would probably be Kaiser Permanente's, but mining medical records for early predictors for dementia.
Max. Mackintosh: And then one thing that Indra and I are both involved in is we helped set up One HealthTech, which is a community that looks to get more women and people from diverse backgrounds working in digital health and health technology.
Quinn: Awesome. That's very cool. How long have you guys had that organization going?
Max. Mackintosh: Well, it's actually stemmed from an American organization actually called HealthTech Women. We started it maybe almost three years ago now?
Indra Joshi: Yeah.
Max. Mackintosh: But because it grew so quickly in such a short period of time in the UK, and because of the differences in basically culture around healthcare between the US and the UK, we had to consciously couple in a Gwyneth Paltrow/Chris Martin kind of way.
Max. Mackintosh: So we're still very good friends with our counterparts, HealthTech Women, but we had to go off a bit on our own. Yeah, it's about three years.
Quinn: Okay, very cool.
Brian: Excellent. All right, ladies, we are huge believers in asking questions over here, specifically action-oriented questions. We are in a time for action, so we have a lot of them. We're going to set up some context for the conversation today and then get into some whys and hows and what ifs and whats and get some answers out of you that can motivated our listeners to take action, if that sounds good to you.
Indra Joshi: Exciting! Action's my goal, for sure, so I'm very exciting.
Quinn: Very, very exciting.
Quinn: Awesome. We do start with one important question. Instead of saying, "If you could both just tell us your entire life story," we like to ask – and if you could answer individually, that would be great, unless you have some pre-scripted together answer – why are you vital to the survival of the species?
Max. Mackintosh: You're asking British people sort of narcissist megalomaniacs in that question.
Brian: Yeah, yeah, right. I know!
Max. Mackintosh: That's quite a challenge.
Quinn: Oh, I'm very aware.
Max. Mackintosh: Indra, you go first.
Quinn: I worked for "The Financial Times" over there for a long time. Believe me, I can't even imagine asking this to some of my newsroom friends.
Max. Mackintosh: Oh god.
Indra Joshi: So quite hilariously, I did some media training this morning and one of the things the guy told me is you should always have three messages to bring across whenever you give an answer and give it in really simple, plain English.
Indra Joshi: So very simply, we need doctors to save lives. Very simply. One reason for existence. We need to broaden the argument whenever – and I think this is a new argument – we are bored of listening to white men talk about things that don't always apply to just that part of society, we need to make it a bit more diverse. And the third thing is let's change this biomedical model, turn it on its head, give more control to patients, more control to citizens, to users. Give them the information they need. There's no need to have this traditional biomedical model.
Indra Joshi: I think between Maxine and I, we're here to change that, and that's our reason for existence. Certainly mine. Maxine, what about you?
Max. Mackintosh: Yeah, actually, you've sort of answered 90% of that for me. Phew!
Indra Joshi: Thank god.
Max. Mackintosh: I guess the only thing I would add is that one thing Indra and I talk about quite a lot is it is hard to find people who are really sitting at the intersection of data and AI and the clinical, biomedical world. Though I'm not a doctor by background, I did neuroscience, sitting in that gap is quite challenging and there aren't a lot of people. I am vital because I am trying to carve this path and the group that is carving this path is not very big, so we're sticking at it in a wee group with a lot of tenacity.
Quinn: I love that. That's great.
Brian: Yeah. Great answers always come right after that initial, "Oh, this is a narcissistic egoist question."
Brian: But then really great answers come out.
Quinn: I know. You said you had press training this morning. So you've what, had 12 hours to prep those answers? That's impressive.
Brian: Yeah, by the way, Indra, crushing it so far.
Quinn: Yeah, right. It's going so great.
Indra Joshi: Thank you.
Quinn: All right, look, just a little context, we won't get too in the weeds here for everybody. Well, maybe not. I guess this is part of the problem. I was going to say, "Everyone's been to the doctor," but that's not true in America because you can't.
Quinn: In the past decade, we've all been told, both on the medical profession side and on the consumer side, a little more out of our control, that we're switching over to electronic health records. Simultaneously, we were promised so many benefits of this long, complicated, difficult but beneficial switch: huge data, varied data, the potential to put algorithms to use on that data, personalized medicine, a variety of sorts, fewer unfortunate hospital errors, so cleaner and clearer communications among hospitals, pandemic predictions, cost benefits, all of these things.
Quinn: But there have been many institutionalized, and understandable in some ways, growing pains ranging from as simple as the poor handwriting on past records to a complete lack of standardization across forms, even still on some of the newer records, to spotty translations, to privacy and ethics questions, to implementation costs. But we are seeing some progress in a variety of places and we are starting to be able to look forward to some of the opportunities we might be able to have from this long process.
Quinn: To dig into our topic here, again, the future of digital health isn't just driven by white males and the dataset isn't just white males for once, or it shouldn't be or we're working towards that or at least we're becoming more aware of our deficiencies, whether they're programmed or not, but I want to dig into the fundamentals. I imagine the state of things is quite different between the US and the UK because your healthcare system, for example, isn't horrifically broken, but I do imagine there are some similarities.
Quinn: Where are we and why are we where we are and what's the next step?
Max. Mackintosh: Indra, do you want to give a policy overview and then I'll go into the secondary use stuff since that is your job?
Indra Joshi: Yeah. I think if we just take a step back. People talk about digital health and I think when we're in that space, we should always say, "What do we mean by digital health?" Because we don't really say-
Brian: What do we mean by digital health? Yeah.
Indra Joshi: Yeah because we don't really call it digital travel, do we? We don't really call it digital banking. I mean, some people call it online banking, but it's just banking, isn't it? And it's got a digital interface.
Indra Joshi: So I think we still are slightly stuck in this space of calling it digital health versus just it's healthcare and it may or may not have a digital interface. When you talk about it that way, actually what we've been doing today, we've actually been doing for quite a few years. The UK is one of the leading and probably the first countries to have all of our primary care, when you go and see your family doctor or what we call our General Practitioner, all of your care records in a digital format. It'd be an electronic health record or on some kind of computer system. We've been doing that for quite a few number of years.
Indra Joshi: And now what we need to do is bring the rest of the healthcare system along that journey. So when we talk about secondary care, we normally mean things in a hospital or in a specialized unit. And then we also talk about community care and social care. Those are people who work within a community in a care home setting or in a practice that may not necessarily be within the general practice.
Indra Joshi: We're making that transition. In the UK, we've been doing that transition quite well. We have quite a number of what we call Global Digital Exemplars where we have given a sum of money to hospitals, and what we call NHS Trusts, to say, "Here's some money to really get you on that ball of getting more of your services in a digital format in a digital way." Now, that might be electronic health records, but it's also a number of other tools and devices that people could use, so actually that they are giving, not just their workforce, but also the people who come into that hospital, the best possible treatment.
Quinn: Can you give some examples of what those tools might be?
Indra Joshi: You could think about some decision tools. Traditionally, we think about an electronic health record. That's what we mean by digital.
Indra Joshi: But actually, when you go into a hospital, if you've broken your arm, you come and see me as a doctor; but actually, before you come and see me, you see a nurse who may or may not take what we call observations. She measures your heart rate, your respiratory rate, your blood pressure. All of these things can be done digitally, so you can do them with a camera on a phone. There's some really great tools out there that use some whizzy algorithms at the back, so literally, you just stare at a camera and it does all of that for you.
Quinn: Is that the technical term, "whizzy algorithm"?
Indra Joshi: Literally, I love to say "whizzy algorithms."
Indra Joshi: As I say it, I'm the doctor; I can save the life, but I don't really understand the data.
Brian: You can say whatever you want.
Indra Joshi: But you know, people will like that and I think that makes life a lot easier. It means you, as an individual, can actually – just as when you go into McDonald's and you say, "Oh, okay. I want this order and this order," and you do it on that big screen – actually if we give people a bit of privacy because obviously health, we're very protected about what information is shared and not shared, you can go up to a very similar tool. We've got some great examples of that here in London in the South of London, where you can go up in the Emergency Department, you, yourself, fill out what's wrong with you. You have a tool like a machine that takes your blood pressure and your reading.
Indra Joshi: Now currently, because all these things are being validated, you will still see a nurse who will just validate all of that with you. All of that information is then sent to the doctor behind the door, so to say, "Do we need this person straightaway or actually can this person be seen in a different place, like by a pharmacist, or can they be treated remotely by one of the nurses?"
Indra Joshi: So you know, it's about thinking about things slightly differently from the traditional models we've always thought about. That's what I mean by it's not just always about an electronic health record. There are lots of other things and I mean, I could go on forever and talk about some of the apps and wearable technology that's out there, some of the VR technology, virtual reality technology, but I'm going to take a pause and Maxine, maybe you want to jump in with some proper data science stuff.
Brian: Can I just ask one question also? Sorry. Does it seem like this transition is a top priority in hospitals in the UK? Is it happening efficiently and quickly or is it not?
Indra Joshi: What I would say is change management is always difficult. People quite often say technology is the answer to everything; but it doesn't matter what industry you are in, technology can help, but actually change management in itself can be quite difficulty. To do change management, actually you need very good leadership. One of the top priorities we have currently within our plans are to say, "How do we encourage this leadership in this digital age?"
Indra Joshi: We have something called the Digital Academy, which is bringing through a suite of professionals to be leaders of this digital age. It's about bringing people on that journey with you. It is a slow journey, but we are making progress.
Brian: Awesome. Very good to hear.
Quinn: Must be nice. Maxine?
Max. Mackintosh: Yeah, well I was going to, when Indra was talking abut a lot the things that happen from a patient's perspective often within the confines of, say, a hospital. Many people, I suspect if you were to take a random sample from the population, wouldn't think that the NHS was very digital.
Max. Mackintosh: But one of the things that's currently being piloted at the moment with full release quite soon is an NHS app, which will allow people, on their smartphones, to ... It's a symptom checker, book or manage GP appointments, order prescriptions, look at their GP medical record, register as organ donors. There's all sorts of public-facing consumeresque interactions now that are going to start to be facilitated by this NHS app, of which there are a number of different organizations already doing within the NHS, kind of private commercial organizations. They have often struggled to get into the system and it's taking them a very long time to get adoption.
Max. Mackintosh: One thing that's very timely for this call was that our new Secretary of State recently just announced his vision for the future of the NHS. To kind of summarize a 12,000-word document in a sentence, the gist was we want to create the marketplace through better use of standards upon which the market will provide the solutions. That's, I think, a quite interesting approach by saying we want to make sure that the infrastructure is there, so that it can accommodate some of the best innovations.
Quinn: Sure. It does seem to make sense though, right? It's like, "Hold on, let us get our shit together and standardized everything and make sure the infrastructures there." And then everybody's always talking about how the market will provide the end benefits, but if you just have at it randomly without everything in place first, it's going to be pretty difficult, or you could just call that America.
Max. Mackintosh: That's true. A quite boring but good example of that is something called the NHS Number. Each person is identified by their NHS Number. This allows, even though in the UK people think we're one organization, the NHS is also extremely fragmented, but the fact that everyone has a unique patient identifier means that technically, all records around that patient could be linked. That means that I have access to the records that I have in order to do my research.
Max. Mackintosh: My data that I'm looking at has 16 million patients in the UK linked between primary care, secondary care, and [death data 00:19:20]. That's all because we have this unique patient identifier. That's an example of a standardization in some respect, and that has facilitated a huge amount of incredible of work done to-date. I think even though that's not a very sexy and exciting thing, that's a really good example. If you get that right, you can do population health at scale.
Quinn: Oh no, it's a fundamental piece of the puzzle. If you jump ahead, and I don't know if we'll have time or if you guys are interested in talking about how there's been talk of moving medical records onto the blockchain, but it seems like the US is so far from that. The pushback a politician or a medical representative would get in any way from even suggesting everybody should have a number linked to them, even though we already have that with our Social Security numbers, is just, it seems far-fetched, which is frustrating because it's a fundamental building block for everything else.
Max. Mackintosh: Mm-hmm (affirmative), yeah.
Indra Joshi: Yeah and I think that's a really interesting point, but it goes back to the point that Maxine was talking about, which is to allow these things to flourish, A) you've gotta have some standards. When you build a house, what do you need? You need to have your bricks, don't you? You need to have your mortar. You need to know, "And this is how I put them together," but how you decorate that house, where you actually put that house, is totally your choice. Where you put it might be a little bit limited on to space, but what we're trying to say is to do all of these things, to do this – and I would call blockchain slightly whizzy technology – is you need to-
Brian: There that term is again.
Indra Joshi: You really need the fundamentals in place. I think a lot of things have developed quite rapidly and we've not really had the chance to think about those fundamentals in the health and care, especially in the data space. Now we're getting that opportunity to actually lay down some ground rules, for want of a better word, so that we can start doing this stuff effectively at scale.
Quinn: You guys sound like you're actually optimistic about the next era of digital health in the UK.
Max. Mackintosh: Personally, I do feel very optimistic. I have a huge amount of faith, personally, in the new team that's come on. I'm specifically thinking about Matt Hancock here and Hadley Beeman, who's his technology advisor. The reason why I mention her is because she is a proper, open standards, web architecture nerd. I think having someone like that so close to decision making in health and technology can only be a good thing.
Max. Mackintosh: So I am feeling very positive reading the Secretary of State's latest new vision. It's very unsexy. I did a Control + F to find how many times I could read AI in the document, and it only came up four times. That filled me with joy because it just proves that the document was about the sexy stuff; it was about getting the basics right.
Quinn: Sure, sure. No, the sexy stuff is fun, but if there's no foundation to your house, you're in deep shit.
Quinn: Or it's just Facebook.
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Quinn: There have been some stories recently. We've talked about a little bit here about health records and genomic studies, how we have more or less been ignoring a variety of races, which surprises no one.
Brian: Yeah, shocker.
Quinn: The same with a lot of these ancestry or DNA tests and things like that, how of course, the way data works, is the more data, the more varied data you have, the more complete picture you have. But it seems like, at least right now, for some of these "big data" projects, that we have a relatively incomplete picture of health, or at least a very white one.
Quinn: Do you guys have any sort of perspective on that as you're starting to move forward or working on things like dementia? What are the benefits of having a greater variety of data and how can we better approach those things to incentivize people to participate?
Max. Mackintosh: Yeah. In the UK, we are 81% Caucasian, but in London, it's far lower. It's less than 50% in fact. So even within the country, you have huge regional differences. As we all know, clinical trials have always, by and large, recruited slightly more affluent and/or scientifically literate people who have an incentive to be involved if they're not being paid and are often white.
Max. Mackintosh: The good thing about the work that I do is it uses routinely collected data. That's a pretty good and accurate cross-section of society and most of the population is registered with their family doctor.
Quinn: Apologies for interrupting. Could you just define routinely collected data for us?
Max. Mackintosh: So data that's collected is a byproduct of your interaction with the health system. Every time you have a touchpoint with the NHS that's digital in some format, that will be recorded. In my case, every time you go see your GP, that will be recorded in your electronic health record, which then gets anonymized, which is something then that I can have a look at.
Quinn: Where did the permissions level happen with that as far as, I mean, obviously the NHS has been collecting data for forever, every time you go to the GP, or like you said, interact with a nurse or a hospital. But at what point – because this is a big thing we are dealing with and will have to deal with here is the point of permissions of, "Oh yes, you can use this for this specific project or in perpetuity." I'm just curious because I know you guys had a Google thing over there, didn't you? With the NHS, a little issue come up?
Max. Mackintosh: That's slightly separate.
Max. Mackintosh: Going back to the first question, in this case, different databases and different data sets are collected at different levels. There was a scandal that happened a few years ago in the UK called care.data, which was a good example about how not to do PR when it looks at population health.
Max. Mackintosh: To tell you what happens now, and certainly in a lot of the databases that I look at, GP practices, so your family doctor's practices, will opt in to have the data from that practice anonymized and put into a centralized database. The law recently changed, but now to not be too boring about opting in and opting out, you as an individual can opt out of that data being shared, but it's always anonymized. Actually, the opt-out rates are very, very low.
Brian: Oh, wow.
Max. Mackintosh: But it's really great to be in a country where the default is that your data will be used for secondary uses, but anonymized.
Quinn: Oh, so it changed from opt-in to opt-out?
Max. Mackintosh: No, just the nature of the opt-out changed a bit, but it has always been the default is that if it's anonymized, explicit consent is not required.
Brian: That seems like a smart thing to bring here.
Max. Mackintosh: Well, it is because the moment you start doing case-by-case permissions, whilst that might be technically better, there is no way you can do population health if you're doing case-by-case permissions.
Quinn: Sure. And we obviously have a very wide and varied population here that's changing quickly, which a lot of folks aren't happy about.
Max. Mackintosh: No, sure. I was just going to say going back to your original point about who's missing in the electronic health records, whilst I have a very accurate sway of the population, we're going to be missing homeless people definitely. Ethnicity in my dataset is coded with a degree of about 80% missingness. Whilst it's a byproduct of routine activity, it is also not perfect by any means.
Quinn: Sure, but it's certainly a standard to look towards.
Brian: It's something.
Indra Joshi: I think that really helps me. It's almost like we planned this. One of the programs we're doing within the NHS is something called Widening Digital Participation. What that program does is it goes around to areas of need who may not even know or have the tools for doing some of this work digitally.
Indra Joshi: Maxine talked about homeless people. These are vulnerable people within society. You might have homeless people, you might have people who English isn't their first language, or you could have a community who just don't have a phone or a laptop or an iPad. Some of these things we take for granted, but actually, quite a lot of communities out there don't have these things or they may have one phone that they share amongst themselves in their family.
Indra Joshi: What we've tried to do with this program is actually to go out to these communities, develop something called a Digital Champion, which is basically a person who, for want of a better word, translates between what your problem is and how could you try and solve that problem digitally in the healthcare space?
Indra Joshi: For me, I think this is a fundamental of really getting all those different datasets together because actually, physically, you have to go out to those hard to reach communities, physically, you have to bring them on that journey with you, and you do have to hold their hand in certain cases and say, "Look, we know you might not feel comfortable doing this, but actually it's vital that we get your information this way as well so," for the reasons Maxine has explained, "that we can get that much more broad ranging dataset."
Quinn: I imagine that just selling it as, "Hey listen, this is going to help us predict and diagnose disease for the betterment of the whole system" isn't necessarily the strongest selling point. I imagine you have to incentivize them in some way on a personal level as well. "This is how this is going to help you specifically."
Quinn: How do you guys sell that? I'm curious. Again, as we are still trying to get everyone to sign up and we have penalties and incentives and things like that, and that's just to participate in the system at all. I'm just curious about any best practices, really, any incentives you've got that have gotten people to participate in that on a personal level.
Max. Mackintosh: Yeah. I guess there's probably two examples. One of them is what not to do and one of them is something that a group in the UK is looking to to increase the dialog.
Max. Mackintosh: So starting what not to do, and this is what I alluded to earlier, something called care.data happened a couple of years ago in the UK. To really summarize it, it was a big initiative to effectively pull almost all of the data in England into basically one pot upon which you could do lots of interesting analytics around it. Part of that would obviously be involve interacting with third parties, for example, commercial organizations or pharmaceutical companies looking to do research to find cures to XYZ disease.
Max. Mackintosh: There's a lot of reasons why people felt that it failed, but one of the big ones was that when that was being decided, it was communicated to the public in a way that was not seen to be effective. One of the mediums by which it was communicated was leaflets in people's doors that was explaining what it really involves. Part of the failure of it was attributed to a slew of rather unhelpful headlines in a big British tabloids basically saying, "The NHS is Selling Your Data to Evil Drug Companies, Pull Out."
Max. Mackintosh: It was significantly more multifactorial than that, but the repercussions of the fact that was a very badly communicated initiative means that now, a few years on after a few stop and start iterations, that whole program has been pulled. I think the repercussion of that will be that it will potentially put the UK back up to a decade in terms of the work it can do it population health.
Max. Mackintosh: So that's an example of what not to do when you're moving lots of people's data around and wanting to plan fancy initiatives.
Brian: Don't step 10 years backwards. Got it.
Max. Mackintosh: And so as a result of that, there's been some interesting new initiatives that have come up. One of the ones that I'd like to raise is one called Understanding Patient Data, which is an initiative that was set up mostly out of the Welcome Trust in London. That really is about getting incredible case studies about people who donated their data or who are actively engaging in data sharing, and the positive benefits that can have, or the basic fact that if, by your data being shared somewhere, someone else – you might not know them, you might ever, ever even know they exist – someone somewhere else is going to be able to benefit because their lives will be saved in some way by the fact that you shared your data.
Max. Mackintosh: They're just trying to create that discussion and also work out where the ignorance is, where the fear is, where the expectations lie because overlaying all of this, in terms of the communication issue, is that in UK, we have a very, very confusing relationship and understanding of what the NHS is, how it interacts with external organizations, and what it does with data. The expectations and presumptions are all over the place, so it's not good enough just to say, "By someone using your data, their lives are going to be saved" because the misunderstandings are way further upstream often.
Max. Mackintosh: And so Understanding Patient Data is really looking to start that dialog.
Indra Joshi: Yeah. And I think the other thing – that's one angle to look at it – and the other angle to look at it is how do you create digital journeys with people? How do you start those off?
Indra Joshi: In the UK, we have something called a Red Book. Every time a child is born, they get given a physical book that's red. That's why it's called a Red Book. In it, you can start measuring things. You've got your youth growth charts, you've got your vaccines that you've taken, you've got your milestones, your developmental milestones, like are you walking? Are you talking? Those kinds of things.
Indra Joshi: And actually, what we're trying to do here is we've got a couple of sites where we've put that Red Book online or we've given it a digital format. That child, from birth, starts a digital journey of sharing their data, putting it in, putting it in a way that is readable across multiple formats. So actually for them, it becomes business as usual. This isn't something to be scared or worried about; this is something that is going in. It's also for the parent to say, "Well, actually, we should be doing this stuff. This should be business as usual."
Brian: How long have Red Books been passed out? Do you ladies have Red Books?
Max. Mackintosh: I don't have a baby.
Indra Joshi: Yeah.
Quinn: I mean, from when you were born.
Brian: From when you were a baby.
Indra Joshi: You should do one.
Max. Mackintosh: I wasn't conscious to know what my milestones were.
Indra Joshi: Yeah.
Quinn: Oh. I mean, you were babies at some point though.
Indra Joshi: So I think they'd be around from the early '80s. Yeah.
Brian: Early '80s?
Indra Joshi: But I wasn't born in the UK, so I personally don't have a Red Book.
Brian: Got it, got it.
Indra Joshi: I was in a meeting yesterday and we discovered, through trial and error, that the Red Books have probably been around for about 30, maybe between 20 and 30 years.
Quinn: Fascinating. Fascinating.
Max. Mackintosh: The issue about this though, the kind of communication of it, is that also, the negative headlines are just so much more clickable and readable than a positive headline. When adjusted for the type of newspaper and negative headlines on data and the NHS, had eightfold higher click rates than positive headlines. Like, "Gary shared his data and therefore Terry got cured from cancer," so positive headlines. It is just because a negative headline, a cybersecurity attack, that sort of thing is just a bit more exciting to read than "someone shared their data and look at this."
Brian: Oh, yeah. I'm sure the same is true here.
Max. Mackintosh: Yeah.
Brian: Everybody wants to know the bad shit that's going on it seems. It's very strange.
Max. Mackintosh: Yeah.
Brian: Hey Indra, what are the biggest obstacles that you run into in your personal interactions as a day-to-day doctor? Anything that's recurring and then how do you deal with it?
Indra Joshi: There are a few things that are recurring, and I think a lot of those, I hope, will change over the next few years. But some of them are some really basic fundamentals, like turning the computer on and it takes about four to five minutes just to switch on. This is a real infrastructure problem. That's not the same across every hospital, but in my particular hospital where I work, it does take a long time.
Indra Joshi: The other thing that is very frustrating that is a common frustration for all of us is the number of log-ins you have. So I have a log-in for, say, my A&E system; I then have another log-in for the prescription system; I have a third log-in for the x-ray system. All these multiple systems, as a user, it can be quite frustrating.
Quinn: So not quite as unified as advertised or assumed?
Indra Joshi: Not quite. I think this is common across the globe. I don't think this is a unique problem. This is quite common across the globe.
Quinn: Sure. It's interesting. We're lucky here. Brian, I don't know. What hospital do you go to, Brian? Have you ever been to a hospital here?
Quinn: Okay. You know, we're part of ... I am, I guess. I mostly spend most of my time, I had my children at the Cedars-Sinai Medical Complex, which is pretty fantastic. They've always taken good care, but is almost like a mini-Mayo Clinic in the sense that there's so many different pieces to it. They set up, they were big on turning over the electronic health records the past few years. The partnered with, I believe, Epic built their system. So now, even when a doctor has a private practice but they're affiliated with Cedars, they have the same log-in and they can access the records.
Brian: Oh, that's great.
Quinn: It is, but it's interesting. You go anywhere else and no one else has access to those records. You still have to fax them back and forth.
Brian: Mind blown.
Quinn: But there is some interesting third party participation on the horizon. It probably gets more press than it deserves, but at the same time, I do think is interesting is what Apple is starting to do with health on the iPhones and such. They've built, into their stock Health app, there's a medical record part now. If your hospital system participates and obviously, they need to go through their own internal process to upgrade to electronic stuff and become more standardized, they can sync that up.
Quinn: If I open mine up now, it's actually in a much more readable version. I can see my health record for everything from Cedars from prescriptions to diagnoses to test results and things like that.
Brian: That's pretty wild.
Quinn: There's not that many yet. I think there's about 20 or 25 hospital systems across the country that are part of it, but those can all contribute to your single record. It's complicated and it's going to take a long time obviously/ I think those first 20, 25 are going to be the easy part, but the question is how do we get the other 90% onboard and get those moving along from financial incentives to internal bureaucracy? It's going to be a tough one, but I can already, personally, start to see the benefits of things like that.
Indra Joshi: Yeah. There was a really interesting recent article by David Bates in "JAMA" released last week, saying something roughly along those lines, that we've got a huge number of apps on mobile phones and wearable technology, but they don't always interact with some of these core systems. You might have something great on your phone, but it doesn't really interact with that system. We really need to build some real standards in the APIs to, say, how can we build into that so that, actually, that information can be exchanged, bu also held in multiple forms.
Indra Joshi: I think we're getting there. We are building some of these technologies and these tools. It's a few years still and I think you were really right, Quinn, when you said it's quite a mindset change because you really have to go back to that fundamental where traditionally, you come to me as a doctor for advice, but actually, there's no reason why you can't have that advice on your phone and interact with and be in control of it and more empowered to do what you need to do versus always coming to somebody else for that decision.
Quinn: Sure. I'm curious. Side note, one of my best friends here works in a pretty rural but pretty excellent research hospital and is heavily on the analytics front, a little closer to what Maxine does. He's definitely not a doctor. He is tasked a little bit with dealing with one of America's most systemic medical system issues, which is too many people come to the emergency room and that's the only time they go to the doctor.
Quinn: And so he is trying to work through data and analytics and processes to see ... It's sort of a testing ground because it's in a very rural place where people are overweight and they smoke and they don't take their medication. How do we get people to stop going to the emergency room the only time? Where does that start? Where does that begin? Because the emergency room is so costly and we pay for it every time and that's part of what's bankrupting our system. It's necessary, it's important, but people need to go to their doctors and take their medications and yada yada.
Quinn: I'm curious. Aside from your multiple log-ins you have for a lot of different things or very slow technology, which I imagine is even worse when you get further out from London, what are they other systemic things that you guys are still dealing with on that front, or you could just be done with them?
Indra Joshi: Yeah. I would say there are some systemic things, but actually, there's a huge amount that's actually changing. If you think about things like getting a prescription. Traditionally, you went to go and see your doctor. We're talking about a repeat prescription here versus an acute one for a short need.
Indra Joshi: Now we have a system called the Electronic Prescription Service, where you can either, on your mobile phone or through a deal with your GP, get those prescriptions sent to the pharmacy of your choice. So you never really have to go somebody to see them; it's actually done, you get notified, you get a text message or whatever it is that you choose to say, "Hey guys. Look, your prescription's ready. Come and pick it up. Whenever you're ready, do so."
Indra Joshi: And the other thing I think we're really trying to do, Maxine mentioned the app that we've produced, is to give people that information in their hands. One of the things we've had, we've had it for quite a number of years, is the NHS website, NHS.uk, which is a trusted source of content. It's got information in there that is verified, that is safe, it's secure, and it's a brilliant site. It has about 50 million hits per month.
Max. Mackintosh: Oh, I thought it was 500 million! Oh gosh.
Indra Joshi: Oh.
Max. Mackintosh: Lots.
Brian: Maybe it's five.
Quinn: We'll put "lots" in the show notes.
Indra Joshi: We'll just put "millions."
Brian: Lots and lots of visits.
Indra Joshi: Yeah. I think by giving that information, one of the things it can help you do is, I'm a mom, Quinn, you said you're a dad; in the middle of the night, your kid is sick. You've got the other kid in bed. You don't really want to wake up the kids and take them all to A&E for one kid. What you can do is actually go through this site and say, "Okay, this is what I can see. This is what I think it is," and at the end of it, it's not an algorithm, it's just a helpful decision tool to say, "Where's the best place for you to go?"
Indra Joshi: And the best place for you to go might be the Emergency Department, but actually, the best place could also be your local pharmacy who can help you if your child has an ear infection, for example. I think it's giving people the information in their own hands to make those decisions.
Max. Mackintosh: Yeah, I would just add to that in the sense that one of the obviously amazing things in the UK is that we have a system that's free at the point of care, but as a result, we see a huge amount of moral hazard. Moral hazard is when you don't face the cost of something, you over-utilize a service. When it comes to prevention and the kind of stuff we were talking about earlier, that's a good thing; but if you're a little bit concerned about a mole, you go and see your general practitioner. Whereas I can understand in a different system where you are severely out-of-pocket for every interaction, however the healthcare system, you will wait a long time until you are really, really concerned about the mole.
Max. Mackintosh: But a lot of other health systems in the world will use payment or copays as a method by which to slightly dampen that overuse, but I would agree with Indra that, actually, finding a mechanism by which to activate patients and individuals a bit more so that they are using it appropriately but cost is not the decision and the deciding factor for why they go into using the service or not, but information is. That's, I think the most powerful thing.
Brian: Wow. Let's get to where our listeners can take some action. As usual, it's either supporting various policy initiatives and/or taking personal steps. What are the specific steps that our listeners can do to move this enormous human effort along? What are the positive human benefits that translate from one system to another?
Quinn: Yeah, of all the incentives that you've seen, of all the obstacles you've seen, and again, it's a very different system, but what are the things that you think we could push to our listeners, a lot of which are over there, to really move these things towards the future?
Max. Mackintosh: I guess I've got quite a UK-centric one and maybe a more transferable one.
Max. Mackintosh: UK-centric one would be that, whilst it's fantastic that we have a national religion, which is the NHS, I would love citizens to be able to have a bit more information about how the system works in a way that they can understand and they can internalize into their behaviors just so that people's misunderstandings about how the system works, what happens with data, etc. are better founded.
Max. Mackintosh: So for that, it requires the NHS, the public, the media to all be sending more coherent messages. But I would love for people to not be concerned based on ill-founded fears, for example, about who is your stealing your data. So that's one thing, to be a bit more critical about something that we love so much.
Max. Mackintosh: The second one would be that, and this is a kind of personal gripe, that when it comes to health data, people get very, very anxious about what's happening with it, what can be inferred from it. If you have an STD, all the data shows that you're unwilling to share that data, of all that health information, that ranks the lowest. Yet, if anyone has had the fear of an STD, they will absolutely have typed the symptoms into Google; they've absolutely looked up where the nearest sexual health clinic and what its opening times are.
Max. Mackintosh: So I would just want to raise that your health data is significantly beyond what's in your ERP, and that's a fact, and whether it's because you're directly inputting it into an organization like Google or you can infer it based on what your mobile phone usage is or where you live or what you're eating, whatever it might be, so for everyone to have a bit of a broader understanding of what health data really is because at the moment what people think health data is, is really just sick data.
Quinn: I love that.
Indra Joshi: I'm going to give you something slightly controversial-
Indra Joshi: Which is slightly off-tangent of what we've been talking about.
Indra Joshi: One of the things I really plead to people is let's bring a little bit of humanity back. We are all so pressured, so time sensitive, that we've almost forgotten to care for one another. We just need to bring that back. Digital is a great way to do that. You can build online communities as well as real communities, but don't forget the real communities, and do that wherever you live. It doesn't matter if you live here in the UK, if you live in the States, or you live in China, try and keep that community spirit alive because it's the people-powered change that will help relay knowledge, as Maxine is saying, but also help people care for themselves.
Indra Joshi: I just feel so much in today's society, we've forgotten to care for one another and we really need to change that.
Brian: Completely agree. You can apply that advice-
Max. Mackintosh: That's so beautiful, Indra!
Quinn: That was so great.
Indra Joshi: I know, it's the end of a really long day.
Quinn: Brian is covered in tears here.
Brian: It's fine, it's fine.
Quinn: He's just swimming in them. I love that.
Brian: It's so true.
Quinn: I do think it's important and I feel like sometimes America is having an issue where our community has turned into tribalism and is going on the negative side of that front a little bit, but it does matter, and it does mean so much and has, in the past, affected so much positive change. We can do that again.
Quinn: Okay, last couple of questions and then you're out of here.
Brian: Super fast!
Quinn: Each of you, when was the first time in your life when you realized you had the power of change or the power to do something meaningful? These are the questions we ask everybody.
Indra Joshi: When I was four and a half, I was in nursery. I had a friend who had significant hearing difficulties, but she hadn't been diagnosed as deaf. My dad happens to be a doctor who specializes in ears, and I remember going home and saying to my dad, "You know," I can't remember what her name now is, let's call her Claire, "Claire's having real trouble hearing because she never plays with me when I say something on one side compared to the other." My dad was like, "She needs to go and see a doctor. She needs to get her hearing tested."
Quinn: No shit.
Indra Joshi: I knew at that point, I was only four and a half, but I was like, "Damn man, I want to be a doctor and really make some changes."
Quinn: Oh, that is awesome. Well, Maxine, good luck.
Max. Mackintosh: So I guess I don't have one that I can actually remember but-
Brian: Just make something up.
Max. Mackintosh: When I was just being born, just my head was out, and apparently I was such a gannet and such a piggy baby that already with just my head out, I started sucking on the inside of my mom's thigh because I was so hungry. Apparently, the whole room just erupted with laughter.
Brian: Oh my god.
Max. Mackintosh: And so that's when I guess I realized that, hopefully, I can bring joy to people, mostly through the medium of food.
Quinn: That's incredible!
Brian: She did it! [crosstalk 00:50:25] and you had an incredible answer.
Max. Mackintosh: Is that relevant? Who knows?
Quinn: Those answers are so similar. That's so weird. All right, last one.
Brian: Last one. If you could Amazon Prime one book to the President of the United States, what would it be?
Quinn: Mm-hmm (affirmative). If you could send him one book, what would it be?
Indra Joshi: God, that's so difficult.
Brian: By the way, your answer will-
Indra Joshi: Would he even read it?
Brian: He might.
Quinn: Well, we have a whole Amazon wishlist and our listeners go on there and they send them directly to the White House.
Brian: Yeah, they have.
Quinn: We've gotten everything from coloring books to The Constitution, so-
Max. Mackintosh: Fine. "Little Miss Bossy." Easy to read, he'll read it.
Brian: "Little Miss Bossy."
Quinn: I hope it has pictures.
Indra Joshi: Yeah!
Max. Mackintosh: Mostly.
Indra Joshi: I'd say "The Tao of Pooh" and "The Te of Piglet." Maybe he just needs to let go of it, see it in a bigger perspective.
Quinn: I love it.
Quinn: That's awesome. Guys, where can our listeners find you on the internet or would you rather not be found?
Indra Joshi: We can be found at OneHealthTech.com.
Max. Mackintosh: Yeah, yeah.
Indra Joshi: Yeah.
Max. Mackintosh: Or on the Twittersphere @Maxi_Macki. What are you, @IndraJoshi?
Indra Joshi: 10.
Max. Mackintosh: No?
Indra Joshi: Yeah.
Max. Mackintosh: 10. @IndraJoshi10. That's 10 of you! Wow.
Indra Joshi: There was like nine before me, there's probably 12 after me.
Brian: You're number 10?
Indra Joshi: I'm number 10.
Quinn: Perfect. So everybody, look for the tenth one on the internet, you're great. Guys, I know you gotta run.
Brian: Thank you so much.
Quinn: Hey, thank you so much for your time this evening tonight. I have no idea what time it is there. You're great.
Indra Joshi: This has been awesome too. I want to bit of American love. Guys, this has been great.
Quinn: Oh, no.
Indra Joshi: Yeah.
Max. Mackintosh: We should have totally done this whole thing in an American accent.
Brian: I was thinking about doing the whole thing in a British accent!
Max. Mackintosh: No fucking way!
Brian: Next time.
Quinn: Ah jeez. All right, next time. We're going to keep up. Once you guys have turned us into robots, we're going to catch back up. It's going to be great.
Max. Mackintosh: All right, later. It's been so rad, it's been so rad.
Quinn: All right, now they're just mocking us.
Brian: You're just being so mean.
Quinn: Yeah, all right, we should go.
Max. Mackintosh: Right. Bye, bye, bye.
Brian: Thank you ladies very much.
Indra Joshi: Okay. Cheers guys!
Brian: Bye bye.
Indra Joshi: Bye!
Quinn: Thank you, bye!
Brian: Thank you!
Quinn: Thanks to our incredible guests today and thanks to all of you for tuning in. We hope this episode has made your commute, or awesome work out, or dishwasing, or fucking dog walking later at night that might more pleasant. As a reminder, please subscribe to our free email newsletter at importantnotimportant.com. It is all the news most vital to our survival as a species.
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Quinn: Ugh, just.
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Brian: And please subscribe to our show wherever you listen to things like that is. And if you're really fucking awesome, rate us on Apple Podcasts. Keep the lights on, thanks.
Brian: And you can find the show notes from today right in your little podcast player and at our website, importantnotimportant.com.
Quinn: Thanks to the very awesome Tim Blane for our jamming music, to all of you for listening, and finally, most importantly, to our moms for making us. Have a great day.
Brian: Thanks guys!