The Business of a Clinic (BOAC)

When a Terminal Patient Refuses to Be Passive, with Dale Atkinson, Business of a Clinic (BOAC), E42

• Jared Aron • Season 1 • Episode 42

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Jared Aron speaks with Dale J. Atkinson, founder of Clear Signal Partners, patient advocate, entrepreneur, and writer of The Life Organic.

Dale shares his personal experience of receiving a terminal cancer diagnosis, navigating the healthcare system, building a care team around him, and learning how much communication, coordination, trust, and self-advocacy matter when the patient journey becomes complex.

Jared and Dale discuss what it means to become “CEO” of your own health journey, why patients often struggle to tell clinicians what they are doing outside standard care, how misinformation can pull vulnerable patients into dangerous online rabbit holes, and what healthcare providers can do to create safer, more supportive patient relationships.

They also explore AI in healthcare, AI doctors, ambient scribing, human oversight, regulation, and why the future of healthcare should not be built around efficiency alone.

Disclaimer: The views expressed are the guest’s own. This conversation reflects personal experience only and is not medical advice. Always consult a qualified clinician before making treatment decisions.

In this episode:

  • Dale’s personal experience as a patient and patient advocate
  • Why patients need better support outside the clinic room
  • The communication and coordination burden placed on patients
  • Why patients do not always disclose what they are doing outside standard care
  • The risk of online medical misinformation
  • AI doctors, ambient scribing, and human oversight
  • Why great patient care is also great business
SPEAKER_01

We're very sorry, but this is terminal. Stage four. Very little we can do. The only options open to you are palliative. It's incurable, inoperable. And I got that sort of classic line you get on TV. Go home and enjoy your time you have left, sort of thing. And I read through somewhere between about four and a half and six thousand research papers in the first three months alone. I essentially sat as the CEO of my own health. That's exactly how I approached this whole thing. Was I am the CEO. Nobody is going to look after my health in the same way that I am. From January to March, my metastases had vanished. Every single one of them had gone in three months worth of this protocol. The 12 odd lymph nodes, the secondaries, the primary tumour had all disappeared in just over six months worth of my protocol. My experience was rebellion. My experience was when my oncologist told me that they were going to actually pull my care. My reaction was go for it. Call me a bluff. I absolutely did because they threatened to pull my care for a lot of this stuff. And as I sit here now, I've spent close to half a million pounds on the care the system wouldn't provide, on getting what I needed and getting to where I am now. And it's part of the reason why we're sitting here as well, is because I want other patients not to have to do that.

SPEAKER_00

Next episode of The Business of a Clinic. Today we have a different guest. We have Dale, who is an entrepreneur in his own right and will tell us a bit about that, and likewise a patient advocate. And one of the things I was just saying to Dale was uh ironically or concerningly, probably a bit of both, uh, we've spoken with a lot of healthcare leaders, and the exact framing of, or the two words patient advocate, said the way you just said to me, hasn't really come up, which you'd expect it to in in many healthcare conversations. So we'd love you to introduce yourself and maybe tell us a bit about the entrepreneur had and tell us also a bit about the patient advocate had and how they cross over. Should we start with the patient advocacy? Because it's the uh the bigger bang for the buck, as it were. Let's go for it.

SPEAKER_01

So I think to line that up, give a bit of my background first. So prior to my diagnosis, I spent nearly 20 years working in finance. I was the head of compliance and financial crime for, you know, HSPC's alternative businesses. I sat on the boards of multiple entities, managed multi-million pounds, tens of million pounds worth of budgets and transformations for companies. I went into, you know, places having problems with the FCA, etc. So my background is very much based in risk, in research and in analysis of large-scale problems, and then finding interesting ways to fix those problems. Generally, they can't just be, you know, put into a backlog and easily put into a box. They are things that involve hugely complex ways of thinking, thinking outside of that box and really finding sort of odd ways to try and solve big, strange problems. So then, following what happened. Uh, back in 2024, I'd gone off and set up my own consultancy. I was in the process of contracting for a foreign government agency, doing some really interesting work investigating a former president. Um, can't say too much on that.

SPEAKER_00

I can imagine that if that's fine.

SPEAKER_01

Uh and then the summer of 2024, my partner first got diagnosed with lung cancer. Um, they thought she'd had a heart attack directly into hospital. Just by chance, they did an x-ray on her chest, and they found a very small little tumour in her lung. So roll forward to October 2024, uh, on the 3rd of October she went into St. Thomas's in London, actually, St. Guy's in London, um, and had a lobectomy, so the entire upper right lobe of her lung cut out and removed. Roll forward a few more days, the fifth she comes home, and then the fifteenth, which was our youngest son's first birthday, so our little boy was not even one, um, I went into have an endoscopy. And sadly for me, right there smack bang on the screen, and I didn't have local anesthetic, so for me it was camera down the throat while still awake, and I saw it right there on the screen, there was a rather large tumour. Another few days later, unfortunately for me, the day before my eldest boy's third birthday, my mother, who very ironically was a palliative care nurse, then passed away. We found out on the Monday morning, which is my little boy's third birthday. And then that Thursday I actually went in to meet my oncologist for the first time and was similarly told in a three-minute long meeting in total, uh, we're very sorry, but this is terminal. Um, do not pass go, you know, stage four, very little we can do. The only options open to you are palliative, it's incurable, inoperable, all of the fun words you can imagine. And I got that uh, you know, the classic line you get on TV, you know, go home and enjoy your time you have left, sort of thing. And they shipped my hand and sent me out of the room. That was that was the start of all of this.

SPEAKER_00

Um I imagine that when you tell people that they probably have a similar reaction to one I just had, which is that's a lot to handle as a family, uh as an individual. I mean, there's a lot to handle everywhere you look at it. Um so I'm very sorry to hear about those uh things that you experience in what seems to be an almost an unforgiving short um period of time. Um And then obviously there's the question of well, you you're here and your experience since then was actually not what was surmised for you in that three-minute conversation. So what happened next is the sort of I guess natural question.

SPEAKER_01

But I think the first bridge into that is post that three-minute conversation, when I was sort of winding up into what treatments were available, they then actually gave me, I pushed for very heavily, by the way, my prognosis. They so you said you pushed for? Yes. Because it was not made readily available? No. So as standard, they don't give you your prognosis in the NHS anymore. They feel, and there was a piece of uh a piece of research came out a couple of years ago. It's come out three or four times over the years, but it's come out properly as a re-research piece of evidence, I think, from Harvard Medical School. Whereby if you give someone a prognosis, they are somewhere around 50 to 60% more likely to die within that time frame purely on the basis that you have given them a time frame. And because a lot of people find that quite hopeless and they find, well no, I've got six months left and therefore this is going to happen, they degrade on that timeline. Therefore, the NHS has looked at that and decided, for most people, unless you push for, like I did, and ask for it, they don't tend to give it to you. They will tell you your terminal, they'll tell you you haven't got very long left, they will set things up in a way that you understand and you know that you you have limited time, um, as they had done for me at that point in time, but they don't by default give you a prognosis. Okay, I'm sorry that I actively went to my oncologist and said, I want my prognosis. I'm a very stubborn human being. I want to know my data, I want to know exactly what's going on so that I can do my research, so I can work out what to do next from my standpoint, not just what you're telling me is going to happen. And I kind of I I I followed exactly that. I went, got my prognosis, they gave me 11 and a half month prognosis. They told me that with potential palliative uh immunotherapy, that might extend by a month or two. Um, but that was all they would give me. That was literally as far as they saw my line going with chemo, with immuno, with everything they wanted to throw out. That was the maximum they saw, 13 and a half months in total. Absolute maximum. So I decided to take my stubborn side, decided to take my skill set, decided to take my want to live and my real, I suppose my drive given to me by the grief I was also going through from everything else that had happened. And I tried to turn that into fuel. And I then basically buried myself in research papers. I read through somewhere between about four and a half and six thousand research papers in the first three months alone. So before we got to Christmas time, I had read near enough everything there was in terms of sort of the more adjunct, so those to support it alongside the standard of care. I've read pretty much every major adjunct therapy paper that existed on PubMed on pretty much any database I could get hold of. And yeah, I made myself, you know, thoroughly acquainted with what the science really said and what my options were. From there, we came up with the idea that I wasn't looking to cure myself, I wasn't looking to get rid of my cancer completely, I wasn't looking to fall down a rabbit hole and go for untested crazy science. I wanted to create a very much evidence-based, evidence-backed protocol whereby I knew the pathways my cancer had. I adequately addressed individual pathways, and with that created an overall protocol that could then not interact with the other parts of it and give me the best chances at an increase in quality of life and of sustained living as well. And that was kind of the first juncture in this was looking at how these things interacted with chemo, looking at how they interacted with immunotherapy, and working out what sort of synergistically worked to give me those best chances and to essentially give me more pun to play with my little boys at home and not be the sick cancer patient you see on television. But that's where it was born from.

SPEAKER_00

I think the one that comes to mind first is uh it seems like a uh very fortunate coincidence that your professional foundation and intellectual wiring allowed you to make this an information discovery problem. I think a lot of people, myself included, don't necessarily respond in that way to things. So I think good fortune, if that's something that changed on me. Um I don't know if good fortune is in in in the macro context the right word, but but for you, yeah, it certainly was. And I guess it's interesting also to hear that it sounds like what you were doing was this is the information I've been given, but it represents a certain view of the world. And then there's probably all this other information which I'm gonna go find out about, yeah, which represents different views in the world, and I'm gonna try and piece all that together and come away with my own view of the world. Exactly. And so I'd be quite curious if I understand what that view of the world is.

SPEAKER_01

So I came to the the very quick conclusion, and I mean quick conclusion, it was by the end of October, so within days of being told that I was, you know, terminal, palliative, all these fun things, I came to the very quick conclusion that, first of all, what I was being told by the NHS was only a very small part of science, and that the NHS's view has not changed since roughly the 1950s. Um, that there was a lot that existed outside of the system, and a lot of things that were proper science fact. You know, there's no uh Nobel biology-winning pieces of science behind what I've done. There are multiple studies worldwide over this sort of thing. There are you know, things like the Redo Project, which was a huge thing a few years ago in terms of repurposing medications, etc. There are a lot of people out there doing this, and there's starting to be a lot of people talking about it as well. If you look at the recent uh interview with the Diary CEO with, what was his name? Dr. Thomas Seafried over at the Boston University. He talks about the metabolic approach to cancer as well. And there are a lot of scientists now who are doing this, who are looking at this focused, and who do think that this is the way forward. So we are at a juncture in history where the accepted science and the realist and the sort of realistic side of what exists are two different things. And we can, I suppose in one way, you can justify pretty much any approach you want using this. But in another, if you really hone it down and use sort of a reasonable, pessimistic look at these sorts of things and try to put yourself in your shoes of what are you going to stand by in five years' time, there is a lot of data, a lot of science out there that will allow you to pick through and find a pathway that works for you and your individual genetic makeup. And so with that, I should say, what I did in order to do that, the very first step was to go and get something called next generation sequencing. So instead of just basing this on a finger in the air, I think roughly my cancer has this hallmark, I actually went to got my genetics tested, and it's not that expensive to do, you know, roughly 5,000 pounds in the UK as we stand in 2026, roughly 5,000 pounds to have your genome mapped, to have the exact pathways of your cancer mapped, and then to be able to understand those individual pathways and what drugs might actually affect those individual pathways. So you can then get clinicians, you can get naturopaths, you can get an integrative oncologist, you can get standard oncologists in metallic cases as well, on board to help you to find the right setup and the right protocol of medications in order to put real pressure onto your tumor. So I used a mixture of things like metformin, we used aspirin, which is one of the most widely tested and used drugs on earth, aspirin and metformin, they're crazy used all over the place. You know, there are whole systems set up all across the world who use metformin as an oncological drug, etc. You know, it's not like it's out there or new, plus it's one of the most safety-profiled drugs on this planet, as it stands, because it's used for diabetes. So it's not like I'm taking anything that is completely unknown to science and unknown from a scientific perspective. These things are approved for use within various systems here already. So I took those, I built on top of that by basically making sure that my entire, what we call the terrain, the entire body was in a good place using basically an oropath, a naturopath, mixed in with various other things, with nutrition, etc. And we looked at the autopathic approach to general health. So every single month we would go in and do a full blood panel. Based on that blood panel, we would update everything from my diet, my macros for my diet. We would update the individual supplements I took. We would drop off and take different prescription medications in order to cause different effects in my body, in order to put me in the best possible place to heal, and the best possible place to basically stop the side effects of the mainstream treatment. Because, you know, chemotherapy is not exactly known to be a walk in the park, and it has a huge amount of side effects. And immunotherapy is very similar. They don't talk about it very much in the NHS, but Pembolismab, or Kitruda in the US, which is the immunotherapy I had, is very well known to cause things like liver inflammation. And there's a lot of deaths, unfortunately, that are sort of untalked about. Nobody really puts them out there, but there are a lot of deaths linked to the liver inflammation caused by immunotherapy. So I looked at the ways to limit that damage and limit that effect in order to give myself the best possible chances, essentially.

SPEAKER_00

It feels like so one of the things I think is very interesting is there's the obvious question of like, why doesn't everyone do this? And and I think that might be your entrepreneur hat, and that's going to come on in a few minutes. But the uh I can imagine there are many reasons for it. Number one, um there needs to be an engine behind the pursuit, right? In this case, you were the engine, but you can't be the engine for everyone. Enter entrepreneur hat, or so be it. But I can appreciate that there's a there's a sort of a catalyst of this pursuit which needs to exist. But equally there's a there's a reality of the healthcare provision today. Um and and so I think it will be really interesting to understand is it doesn't sound like you are necessarily criticizing the healthcare system today. You're just saying it's an incomplete view of the world. And so the job to be done is to build a more complete view of the world. And this is this has been your sort of journey, is is establishing that view. I am sort of curious this is a very long journey. It's a very complex journey. It's a journey where you have this stakeholder and that stakeholder and this testing facility, and this a this is a very complicated set of characters that you're needing to bring together, interact with, manage. I'm gonna use the word operationally, it's intense. Yes. How was that?

SPEAKER_01

So given that I've been the program manager multiple times during my career. Well, for me, for me, that was just, yeah, it was, you know, part of my background. It's just another sort of kismic happenstance of karma that I happen to have the right skill set in order to manage all those people. Um, I think for additional context there, I spoke to probably well over 200 clinicians and professionals worldwide before I picked that team alone. You know, I actually stopped and drilled down into who I wanted, not just the best person at what they do, but the person who reflected my wants, my needs, my approach, my focus, who was willing to have it as a dialogue and then form part of my team, as opposed to me listening to them and doing what I was told. So I kind of made my life a lot easier by actually spending the time to do that, to pick the right people and then to link them up as well. And I say link them up. I linked them up to the point where my naturopath and nutritionist has now written a book with my integratologist because I introduced the two of them and they're now, you know, selling thousands of copies of a book online. You know, that sort of link up, that sort of close-knit team that I created around me is part of the reason for that success, not just how good they were in their own right, but the fact that I got them to gel so much and to be part of my journey instead of me just being the patient.

SPEAKER_00

So, I mean, it it sounds like um I'm thinking in in the context of education, the word interdisciplinary, right? And this idea of moving across disciplines, specialties, but um, but equally it feels like you were, again, perhaps because of your background, you were playing the role of almost connective tissue. There are all of these sort of nodes of expertise that are perhaps missing each other in the night. And now you're going to be the central point where these different conversations, bodies of knowledge sort of converge, and you're gonna make sense of it, play it back, figure out what's okay, I understand what I'm saying. Tell me what a CEO is.

SPEAKER_01

It was my job to sit at the middle, to make the decisions, to take the individual pieces of information. You know, as a CEO, you have a CTO, a COO, a CMO, you know, your marketing, your technology, your operations people sat underneath you. And it's their job to give you the individual pieces about their stream. And that's exactly what we did in this case, was I essentially sat as the CEO of my own health journey. I got the individual feeds in from the people that I trusted most, and I put them essentially on my board, and they all fed into me. And then it was for me to make the overall big decisions. I would delegate certain things to them, you know, my prescriptions had to come from a registered prescriber and a proper doctor, and I would listen to everything he said in terms of, you know, take this, this, this, and this in this amount. But if I disagreed, which happened multiple times, and Paul Harry, my doctor, you know, I drive him nuts, because I go back and say, actually, what if we swap this out and move this to this and change this? And it's his job to give me the feedback as to yes, no, this creates this interaction, or you might have a problem here. And then between us we make that decision. And that's exactly how I approach this whole thing. Was I am the CEO, nobody is going to look after my health in the same way that I am. Therefore, this is my ship to steer, and nobody is taking control away from me. You know, I think that's the way that we should all look at our health.

SPEAKER_00

I I agree. And I'm I'm feeling more uh more clearly the uh the title of patient advocate in this case, self-advocate, right? I mean, that this is effectively what what you're doing, and in theory, what you're arguing, more people should be doing as well, um, and that the system should perhaps enable uh people to to do that. So uh got it. This this is this was the patient advocate hat. We understand, I think, a little bit more about your journey. By the way, I I've had the privilege of hearing, but can you give us the sort of one minute of where we are today clinically? Because where's the what's the this point? Yeah.

SPEAKER_01

So as far as the NHS are concerned, I will always be a terminal cancer patient. Okay, because they designate you as incurable and all these wonderful words they use. As soon as you're put into stage four, you are never classed as cancer free. But as I sit here now, I am classed as no visible disease, NVD. So I am one step away from being the best classification the NHS will give me, which is NED, and the only thing standing in the way of that is a PET scan. So I'm waiting for my PET scan later this year that will hopefully confirm me as no evidence of disease, which is the NED, which is as close to essentially remission and close as close to cancer-free as I will ever get, which being that they gave me a less than, I think it was 0.01% chance of beam beam here after two years, that the average, I think the average person without treatment only lasts about seven or eight months, the average person with treatment only lasts eleven and a half, which is why they gave me the 11 and a half month prognosis. And the best they thought I could hope for was about 13 and a half months. So given all of that, the fact that I am now sat here with no visible signs of disease, and I've had no surgery, by the way, um, it seems to be baffling for a lot of people.

SPEAKER_00

Well, I look I I'm not a doctor. That's probably that's probably clear. I I think any version of the story you just told seems very baffling, baffling to you. But I help my oncologist finds it baffling as well. I I think if um if you told me this was a 10-year journey and you managed to sort of steer the ship over that period of time, I don't know. I I I guess I would feel like that's a little bit more I would find it less baffling because it's like long enough to undergo the time of transformation. You're talking what you're talking about is the transformation that was achieved in a period of time is some 12 months. And always so most people can't lose. You know, 20 kilos in 12 months, you lost a tumor. So how how did I mean what do we know about? It's very rare that I don't have words. I really don't have words.

SPEAKER_01

If it if it helps, in terms of that timeline, so this is roughly how it went. So I had spent about six or seven years going to the doctor, complaining of heartburn. I was getting reflux during my sleep. I was getting what we now look back and realize was Barrett's esophagus, which is a precursor to esophageal cancer. It's a very well-known thing. And if you're having lots of heartburn, go to the doctor, go get it checked, e D Z Nat shoot, push and push and push and self-advocate because it's a problem. And it is a precursor to cancer. From there, when my doctor finally gave in, my GP gave in, and I was having these horrendous pains all over my body and especially my shoulder, et cetera, that was February 2024. It turned them into October to get me in for the endoscopy because they didn't think it was going to be anything serious.

SPEAKER_00

To October. Yeah.

SPEAKER_01

And it was only then because a very eager young, I think it was a gastroenterologist, spotted my file, saw that I had lost over, what's about 40, 50 kilos at that point. Um so I'm six foot three. I'm used to being big, big. I was 124 kilos before all of this. I lost 56, 57, I think, kilos in total. 52, I think, was actually the the before and after in the case of like three months. And he spotted that on my file, plus the pain, plus the heartburn, plus the history of all of this. And he went, okay, actually, let's get you in really quickly. Um he had a scan set up for me a couple of days after, or a couple of days before endoscopy as well, actually, on the Sunday. Um and we did it all in that week, and it was a week and a half later. I I was told about everything, sort of thing. So yeah, that happened very quickly. That we're at the end of 2024, we're in sort of November 2024. October. That was all in October, I think. November, I then sort of sat down and was told about what treatment and was given my prognosis. I was already doing my own research back in October, got all of my next generation sequencing, etc., done in end of October, beginning of November time, assume. Yeah, beginning of November, just after I found out I was terminal. Got my nutritionist and my uh my nutritionist, naturopath, and my intuitive oncologist sorted by the end of November, did the next generation sequencing in November, got the first set of results in terms of chemosensitivity, which then encouraged me to go into chemotherapy. Because at one point I was I was actually against it. Um, not because I have a problem with the system or against chemo, but I was told that the chemo I was going to be given would probably have me bedbound, it would probably have my skin flaking, it was a particularly nasty one, and that of the time I had left, I was probably going to spend half of it bedbound. So I was looking at in terms of quality of life. Do I take the six months in bed where I can't really do anything and hug my kids? Or do I go and live for that six months and spend time with my children, running around, being silly, playing on the floor, which I can't do if I'm on the chemo? So at that point, there was that decision. The chemosensitivity pushed me into actually deciding to go with the chemotherapy itself. And it showed that the chemo and potentially the immunotherapy might have more of an effect than the NHS thought, especially if I can bind it in the way that I was looking at with the the off-layer medications. From there, I started the full protocol. So everything from red light therapy to pulse TMF through to I have a hyperbaric oxygen chamber in my house, I have infrared saunas, I have all of this kit. Atop that, the off-layer medications. Atop that, we'd already done two sets of blood tests and I'd already started on my supplement journey. Then we also layered in a low sugar, keto-focused vegetarian diet as well. I started all of that in full in January 2025. In January 2025, I had just had my latest scan, my second scan and PET scan back. I had a near 10 centimeter primary tumour and lots of secondaries, lots of lymph node involvement, etc. From January to March, my metastases had vanished. Every single one of them had gone in three months worth of this protocol. By the end of the summer, my scan showed that I had some distal thickening of the esophageal wall remaining, and that was it from a near 10 centimeter primary tumor. So the 12 odd lymph nodes, the secondaries, the primary tumour had all disappeared in just over six months worth of my protocol. Now, I'm not here to tell anyone to take the same stuff because mine was heavily geared towards my genetics. We'd done all the testing, we took thousands of pounds on doing the proper testing, the proper bloods, the proper everything to match this all up in the right places, bringing in the right experts to do all of this. And in total, I've spent like hundreds of thousands of pounds to get where I am today. A lot of it, I admit, is wasted on silly things because we all want silly things to work. And I thought there was science there that sometimes turned out to be a bit more tenuous than I'd hoped, or the effect of things just didn't work for my genetic makeup, but there wasn't enough science beforehand to show me that we could only do it by testing. So I went from there. Then we hit the point where I was virtually no visible disease by let's say early autumn last year. And then, as we all do, I went, great, it's time to go back to real life. I'm gonna go start companies, I'm gonna go set up a clinic, I'm gonna go do this, this, this, this. So I set up two charities, I started working 14-hour days, wasn't looking after myself in the same way again, dropped off part of my protocol, had the occasional glass of wine, which I hadn't done for a good year at that point, and it started to come back. So, end of last year, I went back in and had my latest C my latest at that point CT scan, and they found a couple of lymphos lighting up, they found the growth in my esophagus was starting to come back. So January this year, having got the results at the very beginning of January, back onto my protocol, back focusing on my health sort of four hours per day every single day. So work has become the secondary, my health has gone back to being the primary, and we are back to no visible disease. And fingers crossed, next PET scan I should get no evidence of disease. So that's the timeline we're talking about. It goes like this.

SPEAKER_00

Okay, so I'm gonna use the words I got it, which is good for I don't got us. But I I I hear it, and and um I think when we first spoke, one of the things that I said that I was so that I found so captivating is that on a personal level, I it was in fact of a clinical diagnosis. I agree with many of the health clan decisions that you may have made, uh alcohol light or alcohol-free, sugar light or sugar. I I I personally subscribe to those as well. Anyway, so I found very okay, so you've been through this this this this roller coaster medical journey. Can we talk about experience?

SPEAKER_01

Let's talk about the entrepreneurial experience or the experience of the patient or the experience of my experience.

SPEAKER_00

I I think Chef's choice, these like I think you can take whatever you want, but but I think the So obviously look at what what we do and we spend all time all of our time doing at Coherent is thinking about um how do you support patients when they're not physically there. Uh most patients, even those who have very immersive clinical journeys, uh, they spend the minority of their time physically on side with a practitioner, the majority of their time at home. We often use the example of a dentist. You spend 30 minutes in a dental chair and you've got the teeth in your mouth for the rest of the year. And and, you know, it's it's like they're not your dentist if you're not there. Yeah. And so this idea of experience, for us, we're very interested in the experience when you're not physically there, um, because there's a huge amount of investment and thinking about the in-clinic experience and oftentimes less about not being in clinic. So I think it would be interesting to hear about all forms of experience, but I'd be especially interested in understanding your opinions and first-hand encounter with what seems like a lot of different phases of the healthcare system, all of which you were in some ways interacting with asynchronously, and that you weren't sitting in 10 clinics every day. There was a huge amount of this back and forth, this who's checking in, checking back to project managing ineffective, which most people won't do. Um, and and and those who want to do it oftentimes can't do it. So you had the the, I mean, I'll use the word luxury, it's not a luxury, but you had the luxury of being able to do it and have the skills to do it. So I I'd love to understand your experience as a patient and as a now advocate stroke entrepreneur around this, but I think certainly the patient experience would be very interesting as well.

SPEAKER_01

Yeah, so I think it's a bit difficult to ex to describe my patient experience, mainly because there's so many different sort of facets and assets and aspects to it. Only came from a place where my whole approach and everything I was doing was very much born out of grief. It was born out of a mother who had been part of the NHS for her entire career. It was born out of my frustration at where I'd ended up. It was born out of knowing and feeling what happens when you lose a parent, and then looking at my own children having just had my diagnosis and deciding not to let them go through that. So my experience as a patient is not an average one. My experience was rebellion. My experience was when my oncologist told me that they were going to actually pull my care. My reaction was, go for it. Call me a bluff. You know, I'm not your average patient. I never profess to be. I'm stubborn, I'm rebellious, I'm opinionated. But that's just who I am. So I would say my experience as a patient has been one of juxtapositions, it's been one of fighting, it's been one of a system that is broken but doesn't need to be. And from my systems way of thinking, from my background, my experience, etc., I have come to very much realize that there are lots about the NHS that is absolutely incredible. It is a foundation that saved and helps so many people in so many different ways, but it has the capacity and propensity, so so much more. It just isn't fulfilling that potential at this moment in time. So my experience as a patient is of a system that is failing itself because it's crumbling. It's of a system that is trying to be better, but can't yet see the wood for the trees. It's of a system that fails people on a daily basis through its own bloat and its own inability to get out of its own way. And that has then led me to trying to find ways to fix that. And the first of which, as you've alluded to, is patient advocacy. So I now put my story out online. I have a blog called thelifeorganic.com. I put my story out on LinkedIn, which is where we ended up connecting. I speak at healthcare conferences about my experience and what the gaps I see in the system. So I recently did a speech over in Copenhagen to, you know, healthcare policymakers essentially, talking about the gaps in the system, not asking for whole scale sale change, and I'm not asking for approval of off-label medications. But I'm looking at the things like if we created a registry where GPs went in and they actually asked patients what they're doing outside or alongside their standard treatment, as it stands at this moment in time, over 90% of patients Google alternatives when it comes to getting a cancer diagnosis. Doesn't matter what diagnosis they've had. 92%, I think, is the current figure by the ONS. 92% of people look for an alternative. They look for additional things to do. Over 50% end up doing those. Of that 50%, I think it's less than 17 end up even telling a healthcare professional at all about anything they're doing. But why is it?

SPEAKER_00

Because it surely can't be because there is a belief that the healthcare professional does not have their best interests at heart. I mean, I would imagine that's not that that's not the foundational reason for Mount So why is it is it just too hard to have that conversation? It's too disconnected, there's too much friction. What is the basis for that disconnect?

SPEAKER_01

People have an innate fear, and especially patients who already feel vulnerable, have an innate fear of being rejected, of being declined, of being of having somebody tell them no. They want to feel supported, they want to feel cared for, and hearing a no is an automatic feeling of justice, it's a feeling of conflict against that. And they don't want to tell a healthcare professional that they automatically think is going to say no to something that's outside of the system. They don't feel safe enough, they don't have a trust in that person to confide in them essentially. And nothing about the clinic clinician themselves is giving them signals to provide that information. They don't ask for it, they don't tell them it's okay, they don't tell them it's acceptable to do anything outside of the system. They just blankly say no because the system has a protocol and the protocol doesn't flex. That's just the way the system is set up, and the way GPs and oncologists, especially, in my view, and my experience, that's just the way they view things because that's the way they're taught to see things. And the amount of times I've had this conversation, and the amount of times you see it on, you know, every social media platform as well. You can see the, you know, Lisa Reardon, who's a very famous breast cancer surgeon who then got breast cancer herself multiple times, she goes on and says, you know, it's crazy that uh sugar causes cancer and then starts eating things of sugar in. Whereas there is actually a, you know, Nobel biology piece of science by a guy called Otto Wahlberg back in the 30s that shows that a lot of cancers are glycolytic. It's the whole reason that a PET scan exists. A PET scan, you feed radioactive sugar to see where the sugar goes, because cancer loves sugar. So for a known oncologist to go out on social media and say that's wrong when the science actually says it's right, just creates this huge juxtaposition. It creates this conflict between the actual science, what the system's telling you the science is, and what the reality is, which is kind of somewhere in between. And it just becomes so difficult to work that out, to navigate it, and to then feel trust in a system that is blankly telling you no, and then quite often not giving you what the science actually is. It's just saying no. And it's then trying to sit there as a sort of figure within that, and it is trying to force you to know. And sadly, patients feel that every step along the way. I absolutely did because they threatened to pull my care for a lot of this stuff. They have thrown up so many issues, so many sign-offs, so many, you know, problems along my journey that I can't see it any other way anymore. You know, and that's me as a very strong individual knowing what I want to do. To somebody who hasn't got my background, hasn't done my research, sitting there and telling a clinician who just automatically dismisses them is so much more difficult.

SPEAKER_00

It's it's interesting. We um we don't do a lot of work, actually, we don't do any work right now in the NHS, so all of our work is in private. And I think there are some differences and also a lot of similarities. Um and and and that's not to point fingers at any clinician, because I think the clinicians that we work with overwhelmingly they have the patient interests in heart. I think all clinicians do. I think it kind of sort of comes with uh comes with the career. Um but what we often hear and see is that there's an inevitable there's an inevitable sort of momentum, almost engine turning of patients come in, patients go out. And yeah, it's very hard to maintain that momentum while also being hyper attentive to the one-by-one. There's that sort of tension of uh the more I can streamline, the more efficient I can be. And also the more I streamline the the the less personal. It it depersonalizes the care. And then there's the sort of an issue in there. But the other thing that we find is that oftentimes clinicians are, and and practices more generally, are not able to extend the uh the attention, the one-to-on-eness when the patient is gone. Because ultimately you have a finite number of healthcare providers or administrators around the healthcare provider, and you have an in I mean, in theory, an infinite you have an ever-growing patient body. The person who came in to see you three years ago, two years ago, they are still your patient, but they're not active in the way that someone who just came in two minutes ago is active. But there are there are supply and demand laws here. You have an infinitely growing demand of patient care needs, and you have a finite supply of care providers. And at some point those two lines diverge. I I guess I'm sort of curious wearing the patient advocacy hat. Thinking about a patient who is um sitting at home right now, concerned, frustrated, not clear on what do they do? What is what is the next step for them? What is the one thing they do, the two things, the three things they do, whatever the number of things is, to begin the journey of feeling, I guess, greater empowerment or improving the way in which they access the clinician. I don't know what that what that is, but what do you do next?

SPEAKER_01

Well, it it it's it's a very subjective thing. It's a very individual thing. And it really comes down to what the aims of that person are. If you get a diagnosis like mine and you are told, you know, less than 12 months to live, end of the line, there's not much going on, go out, find a team. Go out, find the people who believe in what you're trying to do and where you're trying to go. If that's live longer, if that's live better, if that's whichever way it is, find the right people to help you with it. You know, my interpretive oncologist, the very first question he asked me was not, you know, let's try and cure this, let's do this, you know, I think you want to do this, blah, blah, blah. He sat me down and said, look, what are your aims? And we went through, I'm looking at quality of life. I want to improve my quantity of life. I want to stop being in pain on a daily basis because I was in a lot of pain at that point in time. I want to not be taking opioids because they had me on pre-gabbling and oxycodone and all these fun things. And I want to really be able to go and play with my kids. And he went, okay. And I've said. So that was our focus. It wasn't about living longer. It wasn't about, you know, all these various other things you can focus on in the healthcare journey. It was purely about improving my quality of life to and direct my kids. In my instance, that worked best by going to external people. It worked best by finding my own journey outside of the NHS. For other people, that could be finding the right doctor in the NHS. That could be not accepting the very first oncologist you're given in a cancer setting. It could be pushing back and saying, actually, I want to transfer to a different hospital, a different team, go to the Royal Marsden, which is a center of excellence for cancer, or the Christie up in Manchester, the two centers of excellence for cancer in the UK. It could be transferring to one of those. It all comes down to what the individual wants. It comes down to what they're trying to achieve. And it also comes down to very sadly how much they have available in terms of finances. Because these things cost money if you're going outside of the system. And as I sit here now, I've spent close to half a million pounds on the care the system wouldn't provide, on getting what I needed and getting to where I am now. I have spent hundreds of thousands of pounds. And that, I suppose, is kind of what's led part of my now entrepreneurial journey. And it's part of the reason why we're sitting here as well, is because I want other patients not to have to do that. But at the same time, I can't give them a single pathway to follow, and I can't tell anyone what to do because that's not my place. It's down to the individual, and it's down to their ability to self-advocate and their ability to pick that path and to be the CEO of their journey. And part of that is sitting down, the same as you would for a business, having your own strategy meeting with yourself and going, okay, this is my five-year plan. This is my three-year plan. This is my 12-month plan. This is where I want to be. This is, you know, the gates to get through to get there. This is the markers, this is the KPIs, whatever you want to call it, however you want to put it. You come together with your own project plan. It doesn't need to be on paper, it doesn't need to be comprehensive. It just needs to be a plan with a direction. Because the second you have a plan and a direction, it gives you something to aim for. And the second you have something to aim for, it takes the mental load off your brain of just dealing with the here and now all the time, because that tends to be overwhelming to most people. You know, it's great that all these people go online and tell you, live this second, don't think about tomorrow. But as somebody with this sort of a diagnosis, you can't not. Especially when you have scans coming up or the results for scans coming up and you're going through scansiety, the anxiety of waiting for a scan, or knowing that you have, I don't know, the next treatment coming up, etc., you have to plan for all of these things. You have to make sure they're accounted for, you have to make sure they're scheduled, you have to make sure you can fit everything else you're trying to do, be that spending time with family, you know, if you enjoy cooking, but the chemotherapy takes away your ability to cook because you get neuropathy, you plan around these things. And that to me is the best way to do this, is no matter which direction you're going, whether it's just standard of care, whether it's outside the system, whether it's a hybrid of both, like I did, it is making sure that you have your direction, your plan, and your essentially, your immutable decisions and your your facts, as it were, sorted, ready to go that way. Because that gives you the foundation and the base to do so.

SPEAKER_00

So in inside of all this, or I should say around all this planning, goal setting, aims. Two two words uh come to mind. The first one is communication, the second one is coordination. So you're doing a hell of a lot of communicating with your care providers during this time, I would imagine. And you're coordinating a lot. Not only your journey, your appointments, your interventions, your sequencing, all kinds of coordinated. You took it upon yourself to bend that experience around you. This was going to be your at least. People needed to get on the train and the train was going. And that and that's as a healthcare provider, what do you think you can do? Or from a patient advocacy experience perspective, what can a healthcare healthcare provider do? What should they be doing to make the operational administrative friction around things like communication and coordination easier and less overwhelming so that the healthcare components of the healthcare journey can sort of surface? Because oftentimes I think they just get blocked because things are. As a healthcare provider, what can you change? What should you be striving for in order to make, I guess, what I would describe as patient access? I would say I pull as straightforward as possible.

SPEAKER_01

And I think that's where both of our companies sort of come into the conversation as such. Because you're doing it from an implementation level, and I'm looking at it from a diagnostic level. So I think to add context to that. Excuse me. So I have a consultancy that does diagnostics, looking at where patient trust and where patients drop along the journey and actually quantifying that in a way that makes sense directly for clinics themselves. Yourselves then come along and actually have ways to solve that. Sort of post the diagnostic, you have the implementation level. And I think between us, we are sort of solving that problem using, you know, everything from AI to systems-based thinking to all these fun things in order to do that. If we strip that down to the basics of what that means and what that really is, it's taking out the clinician's point of view from the journey. So clinicians, you know, doctors will often go, okay, I see, let's use cancer because it's the easiest one for me. You know, I see lots of people having problems with their diet in cancer. I'm just going to throw in some nutrition advice. And they do it as a, you obviously want this, you know, what people are having problems with this. I'm just going to give you the nutritional advice. Exactly. They don't stop to think, why are people having nutrition problems? Is this because, you know, within the NHS, the nutritionist has told them eat lots of sugar, as happened to me. I'm as told, go away, eat lots of ice cream, eat lots of chocolate, because it will do you good during chemotherapy. In reality, there's a whole massive other problem we could talk about with that. But there's a lot of this. And they just throw advice at people, and it's both in private and in and in public health care, and they just throw advice at people because they think people want it. They don't stop to look at actually, is this person suffering with food poverty? Are they eating junk food because that is what is available and that is what they can reasonably afford financially? Uh, is this person eating baked beans on toast all day, every day, and high carb diet? Because that's just what they have. Have they got things like R Fed? Are they suffering with, you know, food issues? Do they have uh eating disorders, etc.? Are they suffering with their mental health, which means they're more likely to rely on food? And there's a weird statistic, I'm not to do with this, but I'm going to mention it anyway, that men, especially under the age of 50 who get diagnosed with cancer, three times more likely, and this is already the highest risk population for suicide, they're three times more likely than the average male at that age group to commit suicide. There are so many young men suffering with mental health issues that the diet is not on their register because they are too busy just trying to keep themselves alive. So just throwing them a one pager, first of all, it's extra information for them to digest and therefore it's even more overwhelming. Second of all, it hasn't taken account of what their problem really is. And third of all, it's not actually helping them in any way, shape, or form because it doesn't register to them. If you turned around and went, look, instead of giving you this one pager, how about we offer one hour with a registered therapist for free? And then what they do is get the therapist in as part of the clinic. The therapist provides one hour to these people. With that, they work out what the actual underlying problem is. And then they suggest, and you know what could also help with your mental health? If we help get your nutrition on par, it means that your nutritional status will be better, therefore your body will feel better, you'll sleep better, and sleep is, you know, the foundation of most things at this point in time. You'll sleep better, therefore you'll feel better, and your mental health will help improve. Therefore, you'll be more likely to listen to your doctor, you'll be more likely to stay on the path with the clinic. It basically just cascades down. It's like a domino effect. And once you've found that one thing for that patient that makes sense, I can almost guarantee you it will be the same for like at least 20-30% of your patients in your clinic.

SPEAKER_00

It's it's funny, one of the things that we often uh say internally, and we'll say this evening at the event is um you are in you as a healthcare provider are in competition with Netflix and with social media and with companies that have far bigger resources and far more expertise at grabbing attention than you do as Dr. Jane or Dr. Joe or Dr. Whenever. And as a healthcare provider, your job is to support patients who are being almost let hoovered into uh the information abyss, as you described it, uh a surgeon going online and you know, eat the this and eat the that. And this idea that that information has suddenly become navigable because of AI is something I personally don't really agree with because but it's not even the navigable side.

SPEAKER_01

If you look at the way that things like the Google algorithm and the meta algorithm work, the second you go on, and as we mentioned earlier, 90 plus percent of patients go on and Google alternatives. The second you do that on Google, Facebook will start putting up lots of alternative people who went do chemotherapy. And the famous one that I like pointing out is Chris Walk. Chris is online, he's crispy cancer. This is a guy who had a stage two, I think it was, stage two, maybe three, colon cancer many years ago. He had surgery to remove it. And then despite the very small, very, very small chance of it coming back, he decided to say no to the chemo just to limit that potential for occurrence. And he decided to do an alternative route and he did uh what's called Gersen therapy to juicing. He now sells courses and tells people not to do chemotherapy at all, despite having had surgery to cure his cancer. So his is complete and utter misinformation. He tells people like that young girl who died a little while ago, juicing instead of actually getting proper medications in. He tells people to do that route. And there are lots and lots of these people who spend a lot of money getting onto your social media feeds or whatever else, they will take that attention from your patients and they will sway them. And unless you are actively combating that, unless you are engaging with the patient's journey and what they're doing outside to make sure you guide them properly, unless you are informed enough that instead of just saying, no, don't take fenbendaz or the water, what you call it, dog dewormer, actually turning around and saying, look, I understand you're considering it. I know there is some studies going on to say that it is actually potentially useful enhancer, but at the moment we don't have the full picture. And in your case, I think this, then this, and this, and this is the reason why I wouldn't do it. But if you aren't going to, because it is your choice, it's your health, then can you please tell me, let's make sure that we make this as safe as possible, that we limit interactions, etc.? And I say this on the basis that I have come across so many patients on this journey who are taking really heavy medications outside of the standard care route, not telling their doctors. And I have seen deaths, and I mean multiple, probably well into the tens of deaths, caused by interactions from drugs that people are taking outside of the system, getting illegally online and not telling anybody. And then they end up in hospital or they end up in a position where they need the official proper public drugs, and they don't understand that there's an interaction, and they end up in huge amounts of problems for it.

SPEAKER_00

It's funny, there's a there's a lot of stuff happening right now, a lot of money being put into AI doctors, right? For everybody. And and I think on the one hand, cool. I mean great. If you know if it works and and if it's reliable, great. But I don't I don't necessarily see how, at least at this stage, how AI Doctor overcomes uh a lot of the things that you're talking about, right? If anything, if it will amplify in some ways the challenges of narrowness of provision and the absence of empathy or personalization in those conversations, and also the ability to steer someone, perhaps, outside of misinformation.

SPEAKER_01

Yeah.

SPEAKER_00

I suppose people would argue the other way. Oh, well, you now have a sounding board where you can constantly sort of share and refresh information. How how do you see um the the sort of technology overlay coming into this A, patient advocacy, B transformation of one's healthcare journey, C provider perspective, your choice?

SPEAKER_01

Well, I mean, let's take the the example from the last couple of days with Fable V. So a little part of the reason Fable V ended up pulled is because they realized that they were putting in oversight mechanisms and they were actually straining the system in ways that they shouldn't be. They were directing the system to give certain outcomes and they were not informing the users that it was doing so. So Anthropic, actually, having pointed out multiple times that lots of Chinese AI providers were doing this, did it themselves. We are now in a pla in a place in history where AI can make a massive amount of change, it can make so much difference, but we also have to be extremely conscious of how people are using AI to direct us. So ChatGPT now is going towards a sales model. It is trying to take over in-house sales. We have to be wary that the stuff it's fronting are because it's from its own system and it can earn money off of them. Is it doing that purely from a standpoint of this is the best product? Or is it doing it on the basis of this is the best margin? So we now have to be extremely careful, like we never have in the past, in terms of who is selling snake oil, what that automated, what that motive, sorry, and what their ultimate sort of drivers are. And we have to then be our own advocate to be able to say no to things that don't actually fit what we're after. It's also down to us and our own responsibility to be informed enough to be able to do that. We can no longer turn around and say, well, the system should have protected me, because there are so many cases out there now where the system didn't and it's done the opposite. So the onus has to be on the individual to do that. Very sadly. So I suppose in answer to your question, I think unfortunately, it's going to come down to the way that the wider public health system is set up and what the wider public health system allows, because that is then overseen by legislation and by the government itself. And sadly, the AI companies have to essentially cut out of that regulation and that focus. And they can't really skirt round it and suggest things that may be proven in science, that may have all the backing they need in terms of the actual evidence, but they're not approved by the medical health system. So I think it's both a really interesting place to be and a really scary one at the same time.

SPEAKER_00

It's interesting. One of the um one of the biggest or early darlings of AI and healthcare was all around AMB inscribing, medical scribing, and the minutes that you save and the increase in attention you can give to a patient when they're sitting in front of you. Uh and I'm sure there's some truth in that. I mean, I I'm I'm not a doctor, but I would imagine that if you don't have to write things down and you can be fully present with someone, those things are probably true.

SPEAKER_01

Well, if you look at Heidi and Plaude, um there's quite a few systems out there doing exactly that. Having spoken to plenty of healthcare professionals are using them, the one thing I would say is it doesn't give you thinking time. You know, whereby a doctor used to sit there, have their consultation with you, and they used to then sit and physically write notes or type them out. That means their brain's working and thinking about things. And when they're typing in as shoulder pain plus, you know, heartburn plus this plus this. Hold on a minute, that that's actually related. And it doesn't give them that time to replace it and really process it. Instead, the AI is doing all of that, and the doctor's just sitting there and doing the consultation. So in that sort of a situation, the patient feels like they've got a better sort of deal for their money because they're getting more face-to-face time and a slightly better interaction from their doctor, who is looking at them and not typing into the computer screen. But in reality, they're not getting the clinical thought process and sort of stimulation that's needed in a lot of instances. They're not getting that that extreme amount of thought and care that they used to get, because that's not happening anymore. Is it excuse me? Bless you. Um, it's not just me with a ticking nose.

SPEAKER_00

No, no, that time of year. Um I I'm curious, in in the many uh consultants' practices clinicians that you would have seen, maybe continue to see in your care journey. They can't sort of put them on a spectrum of hyper-technology aware and adoptive. Yep. And won't go near it totally allergic to committed to the current way. Where where where do people fall in your experience? Where do they fall or where should they fall, I suppose. Let's go both.

SPEAKER_01

So I think where do they fall is there are two very much extremes. There is the NHS extreme of virtually no AI, uh, may know what Heidi is and may have used it because it's been thrown at them. It hasn't really had any proper training. And I think that's the big problem at the moment is the software is there for a lot of NHS clinicians, but they haven't had the proper training to really be able to harness it or use it the way they should do. Um, or some of them are using AI systems outside of the system, which has a whole other set of data protection problems, which are all coming out in the press, so we won't bother sort of ruminating on that here. The other side of that is people who are absolutely wholesale taking it on and throwing lots of AI at things. And I think the best example I have of this is I was actually watching one of the keynotes when I was at HIMS, and it was a gent from a Palo Alto-based, very big tech company who came on stage to present his AI. First thing he did stood up and went, you know what, I really hate it when people come and demonstrate their own products at these things. Here's my product. And then this very expensive multi, multi, multi-tens, hundreds of millions of dollars worth of system failed catastrophically on stage. And this is a system that is actually in place in clinics, I believe. It is a system that is live. It is a system that has been adopted in lots of places. And in all honesty, if you're a clinician and you put something like this in without understanding that it can fail, without understanding the knock-on effect of it failing, then you don't really deserve to be in business at this point in time. And as far as I'm concerned, unless you are actually using it to better the patient journey, which in a lot of the cases they're not, they're just looking to make more efficiencies to get more money out of their time, then I think you're heading in the wrong direction. And I think the overadoption of AI is there to stumble you on. I think in reality, clinicians need to be somewhere in the middle. They need to be cautious. They need to make sure that they stay within the regulation that's available at the moment. And if you look at things like the AI at this comment across Europe, et cetera, I think those are actually very good. I think they are at a position, as long as they stay dynamic and keep being updated in line with what's happening in the wider industry. I think they are a very good benchmark for what should be used and what shouldn't be used. And if you are sticking to those guidelines, using them properly and to the extent they're intended to be used, creating the efficiencies within your system that still allow you to have the human input as the clinician, they still allow human thought and they actually allow human oversight properly, instead of flipping that around on its head, which is quite often the case with a lot of these AI systems, they're taking all of the thought and all of the process out of it, and you are just the human face for the AI. You need to actually include proper steps, proper junctures where humans have to make the decision, not just click a button and say yes. So I think the ones who are gonna win out in the end, the ones who are going to reinforce the healthcare system and drive the healthcare system forward and be the future of proper healthcare, are the ones who find that proper balance between the two.

SPEAKER_00

I'm gonna use the words human in the loop.

unknown

Yes.

SPEAKER_00

Which sounds like what you're describing, which we very much subscribe to, but I've done the that so it sounds yeah, it sounds like we're just why we so we are in 2026? Yes. No, we're too London day today. We're in 2026. Let's say we sit down in 2036. One of the questions I I always ask is what will we uh what can we expect to be different, or what do we hope will be different in the healthcare system 10 years' time? And what do we expect or hope will not change?

SPEAKER_01

So I think the entire healthcare systems should change. I think by the time it hits 2036, first of all, AI-focused medicine and AI-derived medicine will have taken over. I don't think doctors will particularly have a place in 2036, except as human interaction point. I think the system will have enough power, and if we look at things like, you know, the the evolution into AGI that's coming at the moment, the general intelligence is tipped to be next year at this point in time. And as soon as that happens, a lot is going to change. And I think near enough, 75% of blue-collar jobs, if not 80%, will disappear. There is no need for a management structure, there is no need for computer inputting if the computer can do it for you and do it better. And sadly, we have engineered doctors' jobs to be computer-based jobs. We have engineered them to be science-packed and science-based and based on data. And the one thing systems are better at than we are is analysing data. So it's going to come down to how well the actual regulatory institutions, the governments, etc., how well they implement overarching structures, and how well they then regulate as to what the purpose and what the point and what the juncture for human beings in that is. But I think we're very much heading to a future where there aren't going to be that many humans involved in healthcare, sadly. I think it's a horrible dystopian thought, but I just don't think there will be.

SPEAKER_00

Okay. That's what's changing. Work. What can we hope or expect to keep the same?

SPEAKER_01

I actually don't think anything's going to stay the same. I think we're at a juncture where the intelligence of AI and the amount of drugs it started to be able to engineer and create, if you look at the, you know, the invention of some of the recent inoculations against cancer, for instance, if you look at some of the strides that are being made with the vaccines, that is all AI driven. That is all AI derived, that is all come directly from an AI. And I think we're only going to start seeing more of that. So the one thing I would suggest we do, instead of sort of answering your question directly, but I think the one thing we should be doing is focusing on making sure we have the right data available for that AI and for the future we want, not just the data available to support the current system. So I think back to the sort of point I was making earlier, in terms of having a registry, I wouldn't go for wholesale approval of off-label drugs until they're absolutely proven. But if we can start getting doctors to create a registry of what people are doing, we can first of all increase the safety because we can look at what interactions exist. We can help talk people out when there are interactions. So if somebody is pre-diabetic and doesn't know it, or is taking drugs that affect their liver or whatever else, but doesn't quite understand them, and then they start plying on top things like metformin, which is a very widely taken, you know, off-label oncology drug, that can create things like keto and lactic acidosis, which can then ultimately result in death. A very simple thing to stop, a very easy reaction and interaction to pick up. And you can put a note on someone's system, and if they end up in a hospital with this, you just do this. You know, it's very easy to prevent, very easy to stop happening. And if we create the data to go, oh, with all of this, we can then better feed our systems, which can then better support our overall health care over the longer term. Instead of leaving AI to do all of the legwork later on, we will be supplying the foundation for it, for it then to build a proper healthcare system on top that supports all of us, which is it's the way we're going, it's the way we should be going. And with things like the EU Data Act, we have all the bits in place for it. It's just we haven't put it together to actually do that last little bit and collect all the data rather than this bit of data. So as far as I see it, I don't think there is anything that's going to stay the same. I don't think we can keep it the same, I don't think we should keep it the same. I think with this piece of technology, we have opened up a future that we didn't quite expect. And now we need to, instead of trying to keep things, we need to refocus what we are doing to try and support what that future really looks like and to make it the best future possible. And that comes with proper regulations, that comes with proper guardrails on systems and not allowing them just to run free and do whatever they want. But it also comes with the openness and research that feeding a proper system with proper data comes with. Sorry, big answer.

SPEAKER_00

Big answer, but but better than no answer. I think that's a that's a good way to go. Male, thank you, thank you so much. I think um for those who have been joining, uh this is a different perspective because it's coming from patient advocacy, not practice leadership, not the business of a clinic from a commercial perspective, but we could, I think, very easily agree and argue that I mean great patient care is great business, so these things really should work hand in hand. Really appreciate um the story, the sharing. I imagine that people will have questions, reach out, maybe want to how how do they get in touch with you?

SPEAKER_01

Just as so there's a couple of ways. First of all, I have my own consultancy, which is Clear Signal Partners. Uh, you can find it at www.clearsignalpartners.co.uk. Second of all, I have a blog which I write about my story and about some of the research I've done called Thelife Organic, and that is theliforganic.com. And thirdly, if you want to find me, I can generally be found on LinkedIn, is probably the easiest place, and that is Dale J Atkinson. Thank you so much, Jill. Really appreciate us. Thanks for having me.

SPEAKER_00

Absolutely.