Healthcare Under a Microscope: Time Bombs, Frightened Horses and…the NHS on WhatsApp?

Tom: So welcome to DrDoctor Will See You Now, the next in our podcast series. And I’m really, really delighted to have Professor Joe MacDonald here with us today. I’ll just dig a little bit deeper into this concept of: if you had an assistant—let’s call it an assistant—that could do your basic ADHD assessments for you, that could keep track of your whole caseload and alert you if there were problems… how would that feel as a clinician? It really changes everything, right? The idea of a clinic kind of goes away—your days look different.

Joe: I mean, I think it would feel pretty good if I was getting rid of all the basic admin tasks, which I’m not very good at anyway. In particular, we’ve done something terrible in turning 64-year-old psychiatrists into typists, right? That’s a terrible thing. We’re unpicking that now. You’d have to keep a pretty close eye on your assistant, and you’d have to spend some time getting confident that it was doing the routine easy stuff well before you could let it go. But I think it’s inevitable that we’ll have to do something like that if we’re going to deal with the numbers. I’ve been a frequent flyer in the NHS this last 12 months with my mother and my father-in-law, who are very old and very sick. I don’t think we’re in any way, shape, or form prepared for the demographic time bomb being dropped on the NHS at the moment. And we need to have a serious think about how we do getting old and dying.

Tom: Yeah, I agree.

Joe: Because purely as a visitor to relatives, the hospital seems to be full of very old people who are dying in hospital. And they don’t want to die in hospital—they want to die at home. Somehow, we’ve got to make a big shift. Literally the shift from hospital to community. Nowhere clearer than when people are getting very old and dying. Nobody wants to die in hospital.

Tom: No, quite. I was reading something in the paper at the weekend about the fact that the percentage of over-65s who are renting is massively going up. The percentage of over-65s who are in house shares is massively going up.

Joe: Oh, that’s interesting.

Tom: I think that’s another factor in this demographic time bomb. Not only are we living longer with more comorbidities—and therefore we end up dying in hospitals—but as generations progress, people who haven’t been able to buy their own house or don’t have enough money to retire… they’re living in house shares. It’s going to make that problem worse.

Joe: Absolutely. My mother’s 92. She has very severe dementia—she doesn’t know who I am anymore. She’s in a nursing home. And it’s been an absolute education to be on the other side of the NHS for a while. One of the things during my career was I was part of the team who founded the Great North Care Record. It’s an integrated care record—3.5 million records from general practice shared with 12 trusts, eight local authorities. It’s view-only, but it means that in A&E or on the ward, you can see the GP record, you can see their last hospital appointment, you can see what the psychiatrist said last week. And it’s game-changing in terms of the time it saves junior doctors playing telephone tag with the GP. It’s used a million times a month or whatever—and it’s great. What it doesn’t do, and I thought it might, is coordinate care. I thought: how clever—your mother’s record is joined up across the North East, including you can see all the information. What you can’t get is: what time is the physio going to call? Oh—it’s the same time as the orthopaedic clinic. It’s the same time as the memory clinic. So I thought care would be coordinated by Great North Care Record, but it’s not. There’s a whole layer missing in integrating care. My mother suffers from dis-integrated care despite the shared care record. Necessary, good stuff—cheap as chips as well. It doesn’t have to cost a fortune. Success is usually quite cheap. Failure is really expensive. But there’s another layer missing: the coordination layer. As a carer, I’ve got no sight of when things are going to happen. I am the point of integration. There’s nobody else.

Tom: That is interesting, isn’t it? As a carer, you do end up being the facilitator, the consolidator, the enabler.

Joe: Absolutely. I’m the person ringing the ward when she’s fallen and broken her hip and I can’t get through. And I know there’s a nurse on the ward—often all they do is answer the phone all day because people are trying to get information that really they should be able to see somehow: your mother’s gone to theatre; your mother hasn’t; she’s back from theatre. All of that. There’s usually a body on every ward in the NHS and all they do is answer the phone for information you should be able to see from home. And I’m an expert. That’s the terror of poor Joe Public trying to navigate a system. They think it’s a system. They don’t realise it’s 250 independent organisations—empires—doing their own thing.

Tom: It takes us back to this idea of an assistant… the coordination layer. And we’ve done so much plumbing—Great North Care Record is a great idea. Please don’t throw that out for a single patient record. It’s working. It’s cheap. But why don’t we leverage it? Why don’t we innovate on it? Why don’t we build that care coordination layer—using some AI, link it to your scribe—suddenly we have an intelligence layer that can help the person caring for someone, or going through care themselves, on that difficult journey. This is why I think we’re going to see a really interesting consolidation of value propositions—as we blur the line between the EHR helping the doctor and helping the patient; the care record being view-only to being something we can transact upon. I think it’s going to be the most interesting five to 10 years.

Joe: I wrote a paper with Professor Margaret Anestad—she’s a proper academic, the real thing, not a phony like me. We wrote a paper called Goldilocks and the Installed Base. It’s about the Great North Care Record and how it came about. The fundamentals are: we can’t afford to rip and replace everything. The money’s not there, and it won’t be in my lifetime. So you’ve got to work with your installed base. She edited a great book called Working with the Installed Base. She studied every successful and every failed health IT project in the world. She made a tiny 15-minute video—which, if this goes out, can I send you some links that go with it?

Tom: Yeah, absolutely. We’ll share them.

Joe: There are a couple of key videos everybody needs to see. Margaret Anestad’s 15-minute description of how you do modular cultivation on your installed base—maximise value from what you’ve got—is absolutely key. It literally changed my life and made Great North Care Record happen. Just like a light bulb coming on: you can’t architect it from the centre. You have to grow it from little things that work, and then join them up. Maybe if we join them all up, we’d have the single patient record.

Tom: Yeah, we would. We have it. That’s what I find curious—we do have it. To go back to the gardening analogy, the shoots are grown. There’s a bit of topiary to entwine them together and trim them correctly. But the roots and bones of the garden are there.

Joe: I hope that… I’ve been lobbying quite hard. I’ve come late to the idea that politics is really important. Politicians, for whatever reason, don’t know anything about health IT. Consequently, it’s on us to educate them—to get to know your MP. I pressed a copy of my book into Chi Onwurah’s hands and said, “You don’t need to read all 400 pages—just the foreword and the last page.” Hopefully that knowledge will help. But we need to get to all of them, not least because of regulatory capture. Big corporations are really good at getting the attention of politicians. Politicians get drawn to the big shiny thing. Smaller organisations are less good at capturing attention, and I don’t think I’ve spent enough of my career getting the attention of the people who make decisions—often on thin ice from a knowledge point of view.

Tom: It’s reasonable that politicians don’t have the lived experience you do. The question is: how do we collectively make the point to leaders who are trying to do the right thing? They’re spread broadly and the knowledge is thin. It’s hard to see beyond the big shiny American corporations.

Joe: I’ve got to say something outrageous now. I miss Matt Hancock.

Tom: Yeah, brilliant.

Joe: I really do—because he got it. In my 20 years in the space, I’m not sure anyone else has. He got that it was about connecting things up. He understood interoperability and had a bit of a plan. It all got thrown up in the air with his political career, but I do think we should revisit the tech strategy he and his very bright team developed. I have a fantasy as well: a council of elders who’ve been in NHS IT for 30 years. When the shiny thing is wheeled out, it gets wheeled past them and they say, “We did that in 1993 and it didn’t work. What’s changed?”

Tom: Are you volunteering, Joe?

Joe: Absolutely. I’ve got a team picked out already. They’ve met once. We delivered a lessons-learned session for the people tasked with doing the single patient record. I think they got quite a lot out of it—not least the Goldilocks principle: you can have too much money.

Tom: Spend small amounts of money really wisely.

Joe: Yes. Spend it with people who are lean.

Tom: Modules. Cultivation.

Joe: Exactly. One of my greatest fears is that marvellous things like Shared Care Records in London, the North East, the Midlands—grown for peanuts, often with a few inspirational CIOs—will lose the tiny seed corn they need to keep going or evolve into “2.0” because we’ve spent it all on the big shiny.

Tom: It would be nice if government saw best practice and poured money into watering those plants. I almost think the opposite happens. You get accelerated through innovation programmes—clinical entrepreneurs, NIA, digitalhealth.london—and then you reach a point of scale and suddenly you become the enemy. That’s confusing as an innovator. The missing link is: once you have breakout successes, the NHS should be supporting them, listening to the people who did it, and making them part of the conversation. But instead we get nervous and buy from a big systems integrator. And the other thing government can do is regulate rather than build: regulate for interoperability. Interoperability has come a long way in 10 years, but it’s still hard with certain vendors. Government could mandate open standards.

Joe: You’re absolutely right. Years ago, we wrote the Newcastle Declaration on Interoperability—basically: if you don’t play nice, you shouldn’t play at all. Everybody said yes, but they didn’t do it. Government hasn’t really enforced it. We’ve kept giving big chunks of money to people who haven’t bought into interoperability. That’s something government could and should do.

Tom: Government has sticks and carrots: incentives and payments, and regulation. I don’t think those have been well applied over the last 10 years.

Joe: Seamus O’Neill has a great slide: a cake, Apollo 11, and a child being carried by parents. The headings are: simple—baking a cake; complicated—putting a man on the moon; complex—health IT, raising a child. That’s how complex this is. You’re lucky if the health minister even gets to Apollo 11.

Tom: And there’s a skills gap. Implementing the technology is the secret. It’s not really a technology problem anymore. Implementation is difficult and under-resourced—that’s where we fall down.

Joe: There’s a critical layer of infrastructure: social infrastructure provided by communities. Great North Care Record is built on people who know each other and trust each other. If you’re going to share 3.5 million records across 12 organisations, you’re thinking: do I trust them? Well, yes—I know Andy; I know Dennis. These human infrastructures of trust underpin all progress, but we forget how important they are. Every trust has an IG person, and they’ve become a community who trust each other and share values about information sharing. Without that, you can’t share anything. IG has come a long way. Clinical safety has come a long way. The weather has changed. But if you go for a big data land grab, you frighten the horses again. Care.data took us backwards. Government needs to be careful with people. We did a survey: would you be happy for your care record to be shared for research? 83% said yes. Most of the rest you can persuade. About 3% are deeply privacy-focused—let them opt out. Put a proper opt-out in place. Everyone else can set privacy to share for research. You could create the biggest consent-rich research database in the world—with consent to recontact people. “You’ve got an interesting genome; we’d like you in a trial.” People would be delighted. The NHS could make a fortune as the best place in the world to do research.

Tom: That point about communities of trust is so important. Local hospitals working together—almost no one has a problem with that. But when it becomes government forcing something on people, the public’s hackles go up—and also CIOs and leaders don’t trust people they don’t know, so progress slows.

Joe: Exactly. And if I hear about Estonia again, I will scream. Scale matters. Between a million and five million is about the right size for a big shared care record slash research project: enough data, and you can earn trust. Go national and you often hit problems—too much money sloshing around and people go weird. Enable people on the ground. Don’t give them a billion pounds.

Tom: I want to take us back to neighbourhoods and integrated care. There’s a big shift being talked about: hospital to community; neighbourhood health services. We agree it’s better if people get care at home. Hospitals are dangerous, intimidating places—stressful even to park. If you’re 95, you get confused immediately.

Joe: I watched my father-in-law do it. He descended into a paranoid psychosis in 12 hours. There were other things affecting him, but chiefly he was no longer in an environment he understood. Dreadful for him and horrible to watch. Not a sensible way to run a caring health service. So yes—care at home is better. And the technology and “assistant” should work when people are at home. The bit that’s missing is: we have an aspiration of a neighbourhood care service, but we’re not clear enough what it means. And we’re not clear enough how we leverage what we already have—EPRs, shared care records, tools like yours—versus building new technology.

Tom: What’s your take on that whole movement?

Joe: I love the 10-year plan—not really a plan, more a vision. We need something more concrete. Some of it is coming now. The framework published last week begins to offer a direction of travel. I love the idea of neighbourhoods because that’s where people live. That’s where my mother lives—surrounded by a dozen organisations who don’t really communicate. I love the idea of it coming down to a team around the patient. We call it the constellation of care around my mother: four or five organisations, maybe 20 individuals—physios, psychiatrists, orthopods, community dental, the nursing home… and that neighbourhood team is different for every patient. From an IT point of view, what’s missing is the NHS community WhatsApp. The joy of WhatsApp is whenever you’ve got a new team, you set up a group and they’re all communicating. The stars of your care are currently disconnected. I’d like to see them connect—then I can retire.

Tom: What’s stopping us having that kind of WhatsApp? I’ve got two young kids. Whenever you go to a new childcare environment, the first thing they do is set up a WhatsApp group. And the NHS is running on WhatsApp too—every ward has one; every rota has one.

Joe: I’m sure they’re not putting anything clinical in there.

Tom: Should we say it out loud? The NHS is running on WhatsApp.

Joe: I’m pretty sure it is.

Tom: And I think that’s fantastic. So is there a version where we bring the carer into those groups?

Joe: There has to be—because right now the carer is often the care coordinator between disparate organisations. We need some sort of clinical weapons-grade WhatsApp that can write back to EPRs and shared care records. That’s the missing bit. And it’s so missing that staff are filling it with WhatsApp now.

Tom: People have been nervous about WhatsApp because of…

Joe: My inner medical director did get nervous when you said it’s great.

Tom: I can see you sat up—like, no, don’t say that. Because the inner medical director wants to own all the comms. But to your point about installed base: WhatsApp is the installed base. Users are already doing the thing. So we can apply the principles and be less afraid. I’m not qualified to talk clinical risk, but the challenge is using it outside a trusted group. Those are circles of trust—teams of clinicians who work together. And bringing the carer into that circle is interesting. My mind goes to an AI assistant acting as a filter: carers/patients talk to the assistant, it summarises and triages, and clinicians respond without opening the floodgates to thousands of messages.

Joe: That’s why we don’t collect their email addresses, isn’t it? In case they email us.

Tom: Petrified.

Joe: We’re the only business in the world that doesn’t collect the customer’s email address.

Tom: It’s crazy, isn’t it? But people are already overwhelmed. One reason things are so difficult is beautifully described in Darzi’s report: NHS staff have withdrawn discretionary effort—the goodwill that used to keep the NHS on the road has dried up.

Joe: It’s scary. They run out of gas because the piss got taken out of them. They all caught the same moment when they lost faith—when they got clapped instead of pay rises during COVID. Two of my children are junior doctors. One’s in Australia.

Tom: That’s very sensible.

Joe: It’s true. I was outside clapping too. But in retrospect, we put the workforce through a terrible time with very little.

Tom: Sometimes with terrible digital tools as well.

Joe: Exactly. EPRs have become a significant cause of burnout—we know that from surveys. And I feel partly responsible because I was part of the national programme that gave everyone a mental health EPR. But it’s tricky—because if we were still on paper, we wouldn’t be able to take advantage of ambient voice technology.

Tom: Absolutely. Mental health is actually better set up than the acute sector. If you do any change management, everyone’s excited at the beginning, then you hit the dip. Whether you succeed is whether you get out of the dip. Even successful projects have a dip. You get through it if you trust each other, have leadership, tight scope, all the rest. I think digitisation has got some stuff wrong and a lot right. We’ve been through a big dip. But now mental health could adopt AVT in 12 months, and that wouldn’t have been possible without what came before.

Joe: Going right back to my first encounter with digital health: we put Rio into my trust 20 years ago. Consultants stood up and said, “This is a disgrace. You’ll never get me using one of those.” The Royal College of Psychiatrists were officially opposed to EPRs when I took over as National Clinical Lead. I had to go and convince them—buy the sandwiches for the meeting—because Connecting for Health didn’t have a sandwich budget. They had billions for big American software, but no sandwich budget.

Tom: What a metaphor for trust.

Joe: Exactly. But ten years later, I saw the same guy at a paper-based trust saying, “What we need here is an electronic patient record.” So the weather has changed. They’re about to get lots of lovely toys—ambient tools—and things will be comparable, maybe better than paper. Who’d have thought it?

Tom: And that’s a cause for hope as we wrap up. We’re through the trough of disappointment. The NHS is beginning to make some great decisions again. It feels open to innovation. There are threats, but many reasons to be hopeful. That vision you described: admin handled by tech; caring remotely; awareness of who’s at risk; proactive support…

Joe: My secretary is training as a nurse.

Tom: Everybody’s moving up the value chain. We’re all doing high-value, ultimately human things. That’s what we’ve been aiming for.

Joe: One reason I couldn’t retire was we were in the trough a long time—and then I saw what was coming. I saw the gorgeous tools. I’m going back on the register. I’m going to practise in the modern age.

Tom: If there’s any reason to be hopeful, it’s that Joe is back in clinical practice. What advice, to close, would you give people starting their digital health journey—clinicians, managers, informatics professionals?

Joe: Go to meetings about digital health. Talk to people you don’t know. You only get new information when you talk to people you don’t know. Terrible advice in most circumstances—but in digital health, there isn’t a set career path. The best way is to go to the right meetings, join networks—CCIO, CIO networks—and make friends with people you don’t yet know. I used to open some of my school sessions with: “Talk to strangers.”

Tom: Talk to strangers—go and make it happen—because it’s networks of trust. And most importantly: buy Joe’s book…

Joe: FHIR and Loathing in Las Vegas.

Tom: Why is it called FHIR and Loathing in Las Vegas?

Joe: Fire is a corruption of Fear and Loathing in Las Vegas—fantastic book by my favourite gonzo journalist, Hunter S. Thompson. Las Vegas because you don’t understand the health IT market until you’ve been to HIMSS in Vegas. You don’t know where the NHS stands until you’ve seen 72,000 delegates, and the amount of money involved. And it’s too much money. We’re taking our lead from a country with terrible health outcomes that spends more than anyone else. There’s a real opportunity for the UK to lead the world in health IT.

Tom: I completely agree. The US—17% of GDP on healthcare, single biggest reason for personal bankruptcy. It’s a disaster.

Joe: Things are bad at the moment, but they’ve been bad before—and they did get better.

Tom: Brilliant note to end on. One last question: if Hunter S. Thompson came to the UK in digital health, what would he say?

Joe: He’d drop some acid. Much of what he’d see would be the same—monsters and iguanas in the bar, and a great deal to be afraid of. But a great deal to enjoy as well.

Tom: Iguanas in the bar—but we’re out of the trough, and the future looks bright.

Joe: Yes, I think so.

Tom: Joe, thank you so much. That was fantastic. Real digital health royalty. Go and buy the book FHIR and Loathing in Las Vegas.

Joe: Thanks very much. Thanks so much.

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