Dr Vinay Shankar interviewed me about Patients Know Best for his podcast. His “15 Minutes with the Doctor” podcast is well worth a listen. He has interviewed some interesting experts in the past covering topics like machine learning and gamification. I must say his intro music was cool, I was quite jealous of the rap about this Nottingham GP.
The full transcript is below.
Vinay: It’s episode 17. Cue the music.
Introduction: Welcome to 15 Minutes with the Doctor. The 15 minute appointment where we share powerful stories from healthcare entrepreneurs and innovators so you can grow your ideal business. Uh-huh. Say hello to your host, Dr. Vinay Shankar. Dr. Vinay Shankar.
Vinay: In this episode, we talk to Mohammad, founder of Patients Know Best. [00:00:30] The platform is a patient controlled medical record system, with numerous features for users including seeing results, communicating with health professionals, and sharing the medical record with family or friends. Learn about Mohammad’s early journey into creating software, how the company has grown to secure contracts, which serve up to 2.3 million patients, and how they have started to utilise the benefits of Block Chain.
[00:01:00] Enjoy the show.
Welcome to the show, Mohammad.
Mohammad: Thank you, so nice to be here.
Vinay: Let’s kick off with you telling us a little bit about your background.
Mohammad: I’m basically a geek, so I went to medical school writing software, and then after graduating, working as a doctor for one year, I wrote six books about using IT in healthcare. And what gets me really interested is using new technology with fewer people doing the work, but over the clinical team with a patient. And giving them the tools [00:01:30] right where they’re doing the work, so whether it’s mobile technology, using encryption for security, those are the kind of things that get me excited in clinical care.
Vinay: We’re going to go deeper into Patients Know Best, but why were you interested in software so early on after completing your medical studies? I don’t think many of us have time to look at something else at the same time.
Mohammad: It was early into medical school. So when I was in my A levels, I read a book called Chaos, it wasn’t about [inaudible 00:01:59]. It was about [00:02:00] nonlinear mathematics. And so what it was describing is chaotic systems like the weather, the earth geosphere, the immune system, the economy, and so on. And throughout the book, it was showing that this is how an economist learns about chaotic science to model the economy. This is how a geologist learns programming with chaos science to model geology. And even as it’s said the whole body’s full of chaotic systems, there was a single doctor I read about in [00:02:30] the book that had learned chaotic mathematics and learned how to programme the model of the human body, so I thought that’s what I want to do.
Mohammad: The mind to use with medical school, they said, you know, “What kind of doctor do you want to be?” And I said, “I don’t want to be a practising doctor, I just want to write software.”
Mohammad: Now, people tell me that was very brave of you to say. It wasn’t brave. It was very stupid. Four of them sat me down on the spot saying, “Why are you talking to us?” Luckily, one of them said, “Yeah.” And [00:03:00] during my medical school years, every summer holiday, I got a programming job. You know, I write software trying to model the immune system, trying to model a heart attack, and what was really fascinating to me was that when I tried to do these models, it was usually for a professor of some specialty. For me to do the job correctly for the professor, that professor had to teach me what they knew.
So the professor of cardiology had to explain to me electricity, conduction, and the heart so I can build a model of a heart attack. The professor of radiology had to explain to me [00:03:30] how you annotate CT scans for me to build a view up of them, of CT scans. So it’s really interesting to use the programming to understand healthcare better as well as to deepen my computer skill.
Vinay: So from very early on, you’ve tried to apply a different method of thinking to medicine as a whole, and you’ve been innovating, it sounds like, from very early on in your career.
Mohammad: The way I look at it is, you know, Osler, the co-founder of John Hopkins schools and one of the [00:04:00] most famous physicians in the nineteenth century? So what his generation did was that, back then, pathology was new, and what they proved was that you can’t do medicine without understanding pathology. And then the generation after that, they said, “You can’t do medicine without understanding radiology.” And I think we’re the generation where we’re going to show that you can’t do cutting edge healthcare without the correct information technology. It’s really fascinating to be going through every specialty and dealing with the cutting edge, using [00:04:30] this new technology and healthcare.
Vinay: I presume these are the thoughts that lead you to develop Patients Know Best. What is Patients Know Best?
Mohammad: Patients Know Best is a patient controlled medical record system, and what that means is we get all the data about the patient from GP, hospitals, mental health, social care, and of course, [inaudible 00:04:51] patient and so we put it in one place, one single record, wherever the patient’s going, and the patient controls who gets access to that information. You can see [00:05:00] why that’s useful as a doctor. You can see that if you have all the information, that would be safer, faster, cheaper, and so on.
But what struck me particularly about it, I was writing a book in 2007 in the USA, and I kept on thinking that we’re teaching IT directors how to do this with the patients, and I kept thinking, “I, myself, as a patient, would find this really helpful because I have a rare disease.” So when I go and see my doctor, he panics and doesn’t know what to do, so I tell him, “Look, my [inaudible 00:05:29] said this, my [00:05:30] MT doctor said that, they think you might want to do the following,” and he does the following, and it’s a very fast, safe consult.
And I kept on thinking about why do I know all this information to help my doctor, and I realised as I was writing the book is that it wasn’t because I went to medical school. It was because I went to all the appointments. It’s because the patient is the only one who turns up to all the appointments and sees what’s happening. And the patient is the only one that is left. You know, I have to look after myself eight thousand hours a year, in between doctor appointments, [00:06:00] and the same thing for a diabetic, the same thing for every long-term condition. So I need the information to help look after myself as well as to help the other doctors looking after me. And so I kept on thinking in 2007-2008, I really would like this kind of system, and I was trying to convince people to make it available to patients.
I wrote a book asking people to do that. And they weren’t doing it, and so Patients Know Best come out of, well, if I want this to happen, and I really do, [00:06:30] I’ve literally written a book about it, I just need to get on with it and do it. And we started from I went back to the UK because I thought that was national health service was the right place to do this. It had the right incentive, and we started very small, so thirty-five children [inaudible 00:06:45] Hospital.
Mohammad: And we kept going in lots of different care settings until Northwest London 2015 said, “We’ll do this for 2.3 million people.”
Vinay: Wow. Excellent.
Mohammad: Last year, the Welsh government put out the framework for patients [00:07:00] owning their data and we were the only company that serves that. The Dutch government changed their law to put patients in control. Again, we’re getting contracts, but it started really with thirty-five children back in 2008.
Vinay: Back in 2008, was there any hesitancy initially from the clinicians in regards to patients having access to the records, maybe in terms of workload or worries about what’s in the notes, for example?
Mohammad: When I was trying to convince people in [00:07:30] 2007-2008, I got a whole list of reasons why their filing is difficult. Many of them were incorrectly held beliefs, but they were strongly held beliefs, but you know, some of the ones you mentioned, doctors worried that if the patients saw the information, they would be unduly anxious. I’m aware that, for example, a cancer patient is worried until you tell them the test results. They’re waiting to hear everything, and all their wait is stressful.
Vinay: Exactly. Yeah.
Mohammad: Sometimes they thought that the patient [00:08:00] could take up their time with their questions, unaware that actually the first time the patient may need to be taught, but after they’d been taught, they’re the ones who teach their doctors in A and E, the junior doctors, all the ones who haven’t seen that condition before, the patient saves everyone’s time. They worried that this would be inefficient and sometimes unsafe, but they were really saying is, “No medical school has taught me how to do this efficiently and safely.” And so, really, it was going through all of those issues with them [00:08:30] and creating both the software for them to do this safely and efficiently, but also building the clinical team. Our clinical team works with their clinical team to get them to know that you have a [inaudible 00:08:43] in medical school.
Vinay: So talk us through the process then. Let’s say I’m a patient. How does it work?
Mohammad: So if you’re in somewhere like Northwest London, you might have been a diabetes patient or a kidney patient and you get to your clinic appointment. [00:09:00] During the clinic appointment, they’ll say to you, “You can have access to your records. Would you like to register and look at everything in the system? And also you can send messages to your medical team.” And if you asked a patient if you want to look at your data and do you want to message your team, we get seventy to ninety percent adoption rate. They really want this, they’re just waiting for the opportunity to be offered the system. And the clinic appointment is a good time that we’re thinking about this [inaudible 00:09:25].
So you enter your email address, you choose a password, [00:09:30] security question, and then you log in. And if it’s in a place like Northwest London, you’ll find all your data from any hospital you might have been [inaudible 00:09:39], so St. Mary’s, Chelsea-Westminster Hospital, St. Mark’s Hospital, Hendon Hospital. If you’ve been to a mental health institution like [inaudible 00:09:48] the data from there and then as of February it’ll also see your GP data all in the one record. That works on your phone or any computer with an internet connection. [00:10:00] You can access it from anywhere. You can invite any member of your family to access it as well, and you can decide who gets to see how much of your record, and you can add information. You might connect to Fitbit, you might plug in a Bluetooth monitor that connects to your iPhone, and you can start messaging your clinical team.
So, I saw that my [inaudible 00:10:21] is rising, should I be doing anything different? I see in my chest that I’m supposed to be taking this medication. Should I be doing anything different now that I’ve [00:10:30] got a fever? All of these things are possible for this. You see your records, you add data, and you can message your clinical team.
Vinay: To me, one of the first things that springs to mind is there are so many different systems so GPS, even within the GP field there are three or four different main systems, presume all the hospitals and the mental health trusts they all have different systems. How difficult was it for you to integrate all of those systems into a single platform, which Patients Know Best provides?
Mohammad: [00:11:00] Well to be honest with you I used to have more hair when we started back in 2008. There is a lot of work to be done, but the reason that our customers work with it is they realise that all they have to do is connect to us and we are connecting to everybody else.
Mohammad: So the far smaller number of connections they have to worry about, if everyone connected to PKB. So, yes there are four GP systems, yes there are about five or six hospital systems, yes there are over one hundred devices, but once we [00:11:30] connect to one of those systems or devices that works for all of our customers instantly. It’s instantly available because it’s software with service. We upgrade the system every week and they get all of the integration straight away. So, all they have to worry about is their local data systems being authorised to release the data to PKB and then PKB takes care of the rest with everybody else.
It’s a much more capable approach than the traditional point to point or regional approach we had previously.
Vinay: So, over [00:12:00] the years you’ve seen steady growth and you’ve mentioned some big contracts there. How does Patients Know Best generate income?
Mohammad: We get paid from the service contract. So what that means is the subscription fee that the customer pays, usually based on the size of their institution, but when it becomes a population it’s based on the number of people in there that they look after. So, at one end of the spectrum a department might pay and they get to use [00:12:30] the system with all of their doctors and nurses, all the patients they are looking after, and all of the outside professionals looking after those same patients. So, a diabetes consultant may invite the local GP, for example. The other end of the spectrum you get a whole population, like 2.3 million people in Northwest London, a whole health board in Wales, and then in between you get an institution, so a whole hospital like Jervis Hospital in Dublin, or a line of care. So, all of the cancer patients [00:13:00] in an area, no matter where they are being seen.
So, that is the subscription levels that we have and the one thing that we say is, “Once you are a subscriber, you’re looking after patients, you can send unlimited amounts of data for your patients and we will store them throughout the life of the contract and beyond.” So as long as the patient continues to log in to that record, we will store that record for them indefinitely.
Vinay: Excellent. Are you able to give us any real figures of how much it costs? Is it more [00:13:30] or less expensive than what’s out there. Are there any details that you could give us?
Mohammad: So it’s more expensive than the apps you may see free of charge, because those ones have to have advertising put in or they sell the patient’s data. So, we have a clear business data. We store the data securely. It’s under the control of the patient and we charge for that. At one end of the spectrum to get going into the department it’s thirty thousand pounds basically and that covers all of the doctors and nurses and unlimited another of patients for that department, an unlimited number of external [00:14:00] professionals looking after those patients, and unlimited data within those.
To be honest the thirty thousand pounds is because dealing with a [inaudible 00:14:08] organisation is expensive for everyone concerned. We go through a lot of information governance and a lot of onboarding and so on, just to get them started. But when you bring another department, when you bring on the whole hospital, when you bring in other hospitals, it becomes a lot cheaper, and you can really scale it down a population scale it’s cheaper than the GP record system, for example, but [00:14:30] we’re storing data from the GP, the hospital, mental health, all providers, as well as the patient. So it becomes very cost effective at scale.
Mohammad: So we make it work, even at departmental level.
Vinay: Yeah. Is some of the current systems there much more expensive at scale because they charge per user or per patient?
Mohammad: So that’s the beauty of, so far, this service. When you have central infrastructure, the marginal cost of adding users and patients and data is much lower, and we pass that onto our customers [00:15:00] at much lower prices.
Vinay: I read that you plan to use Block Chain in your platform. How do you plan to use it, specifically, and what are the benefits for you?
Mohammad: I want to clarify that the profit from the data Block Chain is from a company called DocTail, not from Patients Know Best.
Mohammad: But we’re very pleased to be working with them. So they won a research grant from NSBRI out in Brighton East, where they have built Block Chain software to move data back and forth. And what [00:15:30] they needed was to show the data that they’ve moved from the GP system or the hospital system to show it to the patient, and that’s what they’re doing with that. And also, any particular patient enters, or their devices enter to move them back to make them available for the clinical team. Again, through Block Chain. And so the power of Block Chain, the reason they got the funding is in innovation, is that it’s a very transparent approach. You see that Block Chain keeps a log on every transaction.
Mohammad: So the test results on the first of January, [00:16:00] there was a blood pressure measurement on the second of January, and so on. So it’s particularly in research, I think, when you’re trying to document exactly what’s happened with the thought or the trail. Block Chain technology is extremely powerful and when really, has many applications in healthcare and research in the coming years. What’s missing, of course, is how do you show the [inaudible 00:16:23]? And that’s what we do at Patients Know Best.
Vinay: I agree. I think we’re going to see so much more Block Chain technology being used because there is [00:16:30] so much data and there will be much more data, especially with wearables and other devices that we’re going to need some way of managing it properly and using it effectively.
Mohammad: I completely agree, and I mean, just from the way of managing, I don’t know if you came across the privacy label approach that we have on our system. Every data point in PKB is labelled as one of four labels, so general, sexual, mental, and social care data. So general is mostly your record, right? Your high blood pressure, [00:17:00] your diabetes. Sexual health is your HIV or IVF. Mental health is your schizophrenia, depression. Social care is your social care data. And when you share the data with a clinical team or a social care team, you as the patient decide what the team gets.
So I want to share everything with my GP I want them to know everything about me, all four privacy labels. Or I’m speaking to physiotherapy team, I only want them to see my general data. I don’t want them to see my sexual health [00:17:30] and my mental health. And the same thing with the clinical team. They can get the consent on behalf of the patient. “Now I want to look at your records. What would you let me look at?” Or “I’m going to share your record with this team I’m referring you to. I’m going to give them general access so they can look at your cardiology data.” So that privacy model is really just the right fit because it’s easy enough and intuitive enough for most people to understand without reading a manual or going to medical school, but it’s more so sophisticated to cover [00:18:00] any privacy situation across a population, across all the care settings, and diseases the patient may have.
Vinay: Lastly, where can listeners learn more about Patients Know Best or get in touch?
Mohammad: W-W-W-Dot-Patients-Know-Best-Dot-Com is our website. That’s the best place to get started. If you click on “Case Study,” you can see what different institutions have done. Some of them have videos of patients and doctors and [00:18:30] nurses talking about the system. If you want to look at the system, please get in touch with us. Click on “Contact Us” and we’ll arrange a demonstration at your computer. But really, it’s that conversation. We show it to you and we go back and forth on what the clinical pathway is that you would be interested in working with patients in this way. It’s that conversation where you’ll really understand what happens when the patient is in control.
Vinay: That’s great. Thanks again for coming on the show and sharing [00:19:00] your knowledge and journey with us.
Mohammad: It was a pleasure. Thank you very much.
Introduction: Thanks for listening to 15 Minutes with the Doctor. At W-W-W-Dot-Vinay-Shankar-Dot-Net-Slash-15-Minutes-With-The-Doctor. Uh-huh.