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Keynote: Is Technology an Enabler or a Hindrance to Participation in Self Management?

November 24, 2015

A discussion about the role of technology as an enabler/barrier to patient engagement across the spectrum of healthcare design and provision.

Full Transcript

[00:00:00]

MODERATOR

Paul is the CEO and founder of a very interesting organization called TeamBG. Prior to being diagnosed with type 1 diabetes and founding the Diabetes Online Community and the not-for-profit Team Blood Glucose, Paul’s career was in the technology sector, working for companies with a global reach as well as taking startups from the beginning all the way through to floatation. Paul’s led multi-disciplinary teams with multi-million-dollar budgets and has held board-level responsibilities in developing strategy and the implementation of the same. Paul is one of the founding fellows of the RSA’s Fellowship Council and has been Chairman in his parish council for over a decade. Paul, good morning and welcome.

PAUL BUCHANAN

Got to get the bit in about being a parish councilor you know. It was still a start in the community somewhere.

Well good morning everybody. And thank you for having me here. Thank you to our hosts. I’ve got about an hour with you this morning, including Q&A. So what I thought I’d do is, instead of taking all the questions up to the end, is make this the start of an interactive process, which is the purpose of the next two days as well, for everybody to think and talk and understand some of the issues that’ll be coming up. Of course from my perspective it’s all about, where does the patient live within the work that you do, and more importantly the work that our hosts do and why they’ve invited me to be here today.

So I’m going to start off with giving you a little bit of a credibility statement, keeping out of the bright light too. I see what you mean. I was diagnosed with type 1 diabetes just over three years ago at the age of 44. As those of you that do know, it’s an autoimmune condition that attacks the body and destroys your body’s ability to produce insulin, which then makes you medically dependent on society and researchers and academics and clinicians for the rest of your life. So having had a glorious career, not really giving a monkey’s about academia and clinicians and healthcare professionals and being wonderfully self-reliant and travelling and doing lots of wonderful things, to suddenly then find oneself in the position where you recognize actually what society, community, and engagement is really all about, is kind of a humbling experience. And it’s one that has completely changed my view, both of what I wanted to do with the rest of my life and the value of engaging with people at a human level rather than just the world I came from, which was build software, build companies, sell them, move on, do it again, and have lots of fun, but actually not engaging right down at the level where what you do and how you do what you do impacts on a daily basis that people who are at the end of that whole process. I used to call it a food chain, that’s how disassociated I was.

So what I’d like to talk about today, and will invite questions on it anytime—so if you have a question, stick your hand up and somebody with a mic will come and find you so the rest of us can hear you. And do engage. I’d like to talk about three separate areas really, and the reasons that I think that they’re important, in the context of what I understand to be the work that most people in this room do. And it’s about the use of technology and the use of access and opportunity in the context of health literacy for the individual. So taking the work that’s done, whether it’s the academic work, the clinical work, the trials, the technology, the development, and thinking right back to that first principle is what’s the point of this. Is it because I’m excited about creating a new app, is it because there’s a new piece of research that’s come up with a new link or causation between A and B and isn’t that exciting. What’s the core purpose of this. It’s how does it affect that person at the end of that food chain. How does the individual who this may well one day be applied to, react to this information. And is there an opportunity for you to translate the work that’s being done, either personally or through your company or others, into a language, a lexicon that isn’t your academic or technical world, but one that speaks to the very people that you’re hoping to influence, hoping to affect, hoping to change their lives for the better.

[00:04:31]

So those three areas—education, access, and opportunity—in the context of technology being an enabler for better management, for active patient engagement, for translating the fantastic government rhetoric that we all hear of, no decision about me without me, and patients at the heart of healthcare. Fantastic words, probably written large through a number of corporate manuscripts as well. But where is the proof of that, other than the classic stockholder photo of a bunch of patients being taken to Disney World and a chief executive shaking a hand in a nice little corporate social responsibility puff piece that says aren’t we wonderful. Where’s that day-in day-out work that’s one to genuinely engage what you do as organizations and what you state your purposes to be with those people that you affect. And think through not just the immediacy of what you do, but the life cycle of what you do in the context of the individual. And I’ll give you some examples of that.

So in terms of education, a couple of things to talk you through. The differences between, for instance, a company like Johnson & Johnson which has 126,000 employees in 57 countries and turns over 76 billion, and when it launches a new drug has put in several hundreds of millions if not billions of research, and then puts together a budget of another 1.2 billion to launch a new drug on 13 markets all with simultaneous regulatory approval, which is their goal as an organization, to get universal regulatory approval so they can go to market in simultaneous markets and push the same product with the same marketing and the same messaging, and really then drive their profitability. And simultaneously not put together any kind of package of care that wraps around the people they want to market the product to. Now that’s not because they don’t care. It’s not because they don’t generate fantastic products. It’s not because they haven’t got teams of people who believe in better outcomes for patients. If you rip them open, their credo is writ large about engaging with people. It’s their 250 different operating divisions within one company. And the ability for them to talk to themselves, let alone talk to their own patients within their own selves, simply doesn’t exist. And this is part of the mindset of thinking about things too.

So I’m going to give you a practical example. I didn’t bring the entirety of my man back with me. It’s down by the side, I have a rucksack which I have to carry around everywhere. Or when I’m giving a presentation about interoperability, I turn it into my man bag, which is like an even bigger rucksack. And anybody with a chronic condition will understand where I’m going with this. I carry on my person in my pocket at the moment, two medical devices. This one is made by Johnson & Johnson. And it has batteries and insulin—this is an insulin pump and it talks to me and it feeds me insulin all day long and keeps me alive, which is a good thing. We like that. I also have this medical device, which is a blood glucose management monitoring system, called a continuous glucose monitor. It’s made by a third-party company. But it talks to the product that I use from Johnson & Johnson. I also have some test meters and test strips, and things that I have to use to calibrate and to test my blood every day. None of these devices can talk to each other. The only way for the data that I have to take from these to be able to make decisions, almost on a minute-by-minute basis sometimes to keep me safe, is by interpreting it personally, building my own spreadsheets, building my own methodology for working out what’s happening to me now, with this data, to make decisions then about taking for instance insulin, which is quite a potent drug to take and has all sorts of unintended consequences if you get it wrong.

At the same time, all of those products come from within one company. They have different connectivity, different micro-USB ports, different milliamperages that charge them all up. So even if you had one device from the same company, you’d have three or four different bits of string you have to carry around. And none of them talk. And worst of all, none of them talk to a Mac. I mean, come on, in today’s world, none of them can talk to a Mac still. So this is a company with billions of pounds, hundreds of thousands of employees, hundreds of operating companies that spend billions on R&D, and still can’t bring together a product set from within themselves that can interoperate and talk to each other, let alone provide me with a set of products or services that wrap around each of those and help me understand how to bring them together, and then contextualize them for me.

[00:09:45]

So what about all the little sticky things, the cannulas that I have to wear? And the sticky bits of tape that go on to hold the sensors in place? Well they last three days to a week. And you peel them off and you end up with lots of black sticky stuff on your arm. Something as simple as a baby wipe to pull it off. But you have to go out and find that for yourself. And the only way to find out these things, to hack the system, the life hacks that you bring together to understand the lived experience of the results of billions of dollars of clinical research and trials and RTCs on four planets and three continents and RDA and FDA approvals all over the place is to talk to somebody else who has real-life experience of living with the same condition, and say well what do you do when you get the tubing of your pump caught around the edge of a desk as you walk around doing a presentation and ping. How do you cope with that? And then get the answers back from a community of peers who have got that experience. So in the same way that you create professional peer groups to support yourselves, and you have meetings like this to talk about engagement and talk about shared issues, where are those communities that you’ve helped build to understand the work that you do, to translate it into their lived experience, to say to those groups of patients that you have as focus group attendees, how do you take this stuff home and what do you do with it. How does this help improve your life? Does it improve your life? Or do you just take the focus group fees and go down to the pub and have a good chat about what a waste of a day that was. Not that I’ve ever been in a focus group that’s ever done that, don’t worry, patients never do things like that.

So this is leading me into talking about access, engagement, and communities. So when I was diagnosed three and a half years ago, one of the things that I was unable to find out about, find ready access to, was information that could help me understand the lived experience. There’s loads of things out there, Professor Google is a wonderful resource for learning pretty much about anything. And these days with the right access you can pick up all of the latest papers, the research on pretty much any subject under the sun. So if you have curiosity and a vested interest—funny enough, having a life-threatening chronic condition tends to give one a vested interest—you can quickly learn as much as pretty much anybody else on the planet about any aspect of your condition. But what you can’t learn, what you can’t circumvent, and what there is never a shortcut to, is experience. So how do you capture experience, how do you gain experience? And that is to talk to others, talk to others who have experienced the condition. Talk to somebody else who’s been pregnant and has got three children before you have your own. Talk to someone who’s been to Ghana and ask them what it’s like and what the restaurants are like, before you go. Talk to people about scuba diving, what was it like for you? How did you do it, what did you do, before you have a go, rather than—well, some of us do just dive into the deep end obviously but—talk to people.

So I went out and created a community called the Diabetes Online Community. I found in America, a small group of people who were having a weekly conversation on Twitter. And they called themselves the Diabetes Social Media Advocacy Group. Trips off the tongue, it’s a very catchy little title. And it was fantastic. So 3:00 in the morning, I’d be on my laptop and asking questions. What happens when. What do you do if. And it’s fantastic. I met this group of people, all with random Twitter handles, who were sharing their lived experience, their day-to-day experiences of doing things, you know. What happens when you’re taking your kids to school and you forget that you’ve not taken your insulin that morning and your bloods go shooting through the roof and you suddenly drive through a red light, all sorts of interesting things. I was asking questions of course, and the answers were in the context of North America. So I kind of thought, well I can’t be the only person in England who’s got questions like this. Why don’t I set something up over here. And hence I founded the Great Britain Diabetes Online Community. And it kind of grew, grew very very quickly. It went from being a one-hour-a-week tweet chat in August 2012, generating—for those of you who are well-versed in social media metrics—it generated 3/4 of a million impressions in its first hour on Twitter, which according to some advertising people is very very good. It then grew, and grew very very quickly. Within a year, we had 14 of these set up in 14 other countries. We had people from 26 countries logging in to take part. We had nice temporal anomalies going on, we had people waking up at 6:00 in the morning in Melbourne to take part in a tweet chat that was live at 9:00 the evening before in England. So answering questions from the past in the future is kind of cool, I like that.

[00:15:09]

So that obviously led to the thought that there’s more than just a need here in England. This is a community need. So wherever there are people with a condition, and with my condition, there is going to be a need. And hence then, liberalizing it, creating a framework, and then letting it go. And recruiting communities, or people like me in other countries to take on the mantle of running a peer community in their country, in their language, but creating a common framework, a backbone, that we could then all share in a common logo and a common theme and a common set of principles about what we were looking to accomplish. And so we set up some kind of basic contracts around the purpose of and the intent of the Diabetes Online Community, and in this context about patients, about sharing, no intellectual property, no data being gathered, always free, no advertising, no sponsorship, purely about patients.

Which was okay when I set up the first one. Because there was very little internal cost to support it. One website, one domain name, couple of hours a week, my own time, not a problem. Multiply that now by 14 countries and I suddenly found myself doing a full-time job supporting patients and having no real way because of the principles that I had established for it of generating any revenue stream to support it.

But interestingly, and the next link there, Team Blood Glucose, how it came to be founded. Out of a year’s worth of research and looking back over the database of the tweet chats—so this is one hour a week, choose a theme, and ask the community open questions about the topic. Diabetes and depression. Can diabetes cause depression? If so, how? What can you do about it? Where are the resources, etc. Big open questions. The intent here obviously is crowdsourcing information, creating in effect a Wiki for people with diabetes of the lived experience. So within a year, we had something like 100,000 person years of collected wisdom captured in transcripts. Over three and a half years now, we think we’re approaching somewhere around 500 million person-years of experience from 26 countries in 14 languages. So being able to go back through the first year’s worth of transcripts and read them—I was reading them every week anyway, I was writing them up as blog posts and putting them out there with signposted links—developed a very rapid sense of some pretty common issues that occur, not just in the United Kingdom, but universally, irrespective of reimbursement, irrespective of treatment protocols, irrespective of access to education technology. There were a series of themes that just kept popping up time and time and time again. I won’t go through all of them in detail but suffice to say that one of them that struck me as the lowest hanging fruit and the easiest one to implement as a not-for-profit organization was activity. People with chronic conditions wanting to be active, wanting to be net contributors to their societies, not wanting to be seen by society and the media and the redtops as those that are bankrupting healthcare systems and a drain on society and causing all of the problems and responsible for billions of dollars of healthcare spend every year.

So I founded Team Blood Glucose as a not-for-profit. This then gave me a mechanism to transact business, to go back to you guys and say pay me to do this now. I can generate fees, I can consult, I can put on events, I can create programs, I can partner with academia, I can partner with the NHS, we can deliver programs which will help my community, us, be better, live better lives. And so we created Team Blood Glucose. And its mission statement is pretty simple. We just don’t want people to unnecessarily die from having or being at risk of diabetes. And we advocate the use of activity, exercise, as one of the core tools in the management of any chronic condition. In particular obviously my background for the last three years, diabetes.

[00:19:45]

This then led us into a bunch of other interesting things, and perhaps some challenges for researchers in the room and certainly for technology developers in the room. There are a number of us who are increasingly frustrated that—certainly those of us with a technology background—that I can’t get this device to talk to this device, and I can’t get either of these devices to talk to my phone. And I can’t get that data linked to a secure cloud-based system so that, if I were that six-year-old child at school right now and my parents sat in this room at a conference, and I started to have a hypoglycaemic episode or I can capture the data which would then predict that a hypoglycaemic episode is likely to occur, especially as I know that that child is just about to go off and do an hour’s worth of running around the football pitch, I can create an intervention. That data, that technology, the ability to do that has been around for a decade at least. Why isn’t it on the market? Where is it? What are the barriers to making this happen practically for people? So irrespective of the regulatory issues—and that’s big advocacy and that's lobbying governments and that’s creating political will and intent to move those agendas forward—what are the things we could do to take some control over this?

So we created another hack-tivist type—which is probably not a good word in the context of the talk right now, and maybe if you repeat this to the police they’ll knock down the door and arrest me I’m sure—we created an organization which has been running in a number of countries now, and it’s a collective, Health Hack within the world of diabetes. And it is now extending into other conditions. It’s the we-are-not-waiting movement. And some of us got some pretty good techie skills and there are more of us all over the place with some incredibly good technical skills. And we’re able to reverse engineer pretty much any device that’s on the market and break it down and reconstruct it and buy the component parts and build them ourselves. Of course that doesn’t make the devices that we make legal or safe or regulated. But it does prove the point that we can construct these things and create the technology that links them together and then make it open source and freely available, and thereby drive change through the regulators rather than set ourselves up in competition with the researchers, the clinicians, the companies that do have a commercial imperative to move the agenda forward. More importantly, it gives you an opportunity to engage with this audience, because you never know, some of them might be your own employees, to engage with this audience and use the community that clearly has skills and clearly has an intent, and is worldwide. There are 400 million people with diabetes in the world. There are 280 million of us digitally connected. And within three years I’ve created an organization that has touched half a billion of them in 26 countries. So access, opportunity, engagement is there. And the will that’s been in those organizations to do something is phenomenal.

So for those of you that are interested I can send this link to anybody who wants to follow up on it. This was published in the Guardian yesterday. If I knew how to use a PC I’d be able to scroll down. This is my IT director. You see, we actually haven’t got our logo or our name published in this, because this is about the half of it. This is about taking a TicTac box and turning it into an integrated receiver and transmitter that talks to an app that we’ve developed as a community and have published, so that we can take CGM and pump data and push it up to a cloud-based server, and I can access it on any mobile device anywhere in the world. We’ve taken the algorithms that are published and that the companies use and then trademark or protect with their own IP, and worked out from our perspective from first principles, what we would do to make it better, given the technology that’s available to us. So my mobile phone has orders of magnitude more processing power than the pump that pushes insulin into my body and is made of component parts which are of a standard that are also orders of magnitude better than all of the components in here. All of them. The only difference, the reason this costs so much money is because it’s a Class I regulated medical device. That is no reflection of the quality of the build or the standard of the operating systems and the component parts within it. Frankly shocking how crap this actually is. What it does is superb. How it’s made and the profitability that goes into the consumer reports with it, is shocking. Health economists rubbing their hands with glee, finance directors inside organizations like Animas and Johnson & Johnson and OneTouch rubbing their hands with glee looking at quarterly returns. But actually at the end of the day, it doesn’t drive forward the technology and it doesn’t drive forward its best use of it.

[00:25:03]

For those of you that are interested in learning a little bit more about some of the things we get up to, we can send these links to you.

Our experience, and this is taking input from 14 countries, is that institutions generally fail to deliver, not because institutions have a lack of will or a lack of intent, but because by the time you are in an institution, you have so many processes and systems set up that you’ve forgotten that it’s people who talk to people, not buildings. You know, institutions that try to do social media fail, because institutions don’t have relationships with individuals. People have relationships. Bricks and mortar don't care to send that house over there a picture of the cement that’s just been used to put it together. People are interested in what you had for breakfast, especially in my community. They want to know how many carbs are in it for a start. How much insulin did you take. And was it tasty.

And so, like institutions, the structured programs that are put together to help us people with chronic conditions or generally speaking patients, also tend to fail because they’re delivered by institutions. And i think the biggest lesson that I’ve learned from being the recipient of structured NHS education—and perhaps this is a message and a lesson that you might want to ponder on—is much like sex and religion. Unless it’s deeply personal, it’s a meaningless business. It just has no context, has no meaning to you whatsoever. Sitting in a room like this, being told by a dietician or a specialist nurse or an endocrinologist that I need to do A, B, and C, is telling me that I need to be a different person. Living with a chronic condition—and I’ve only had it for three years and I’ve come to this realization, so what it must be like for those who've had it for 20, 30, 40, 50 years—you’re telling me to be different when you tell me to change my therapy or to think through how I adhere, or how uncompliant I am—the pejorative language that’s used in healthcare—to the programs that you have developed for my benefit. What you’re not saying is, how do I apply these lessons to your individual lived experience. What I do is talk to you and talk to your condition, not talk to you as a person. So these things fail because they’re delivered by institutions to a condition, not delivered to an individual and asking that person what do you think you could take from this to apply to your life. So ask the question, if I’m trying to teach somebody something about living with a chronic condition, what am I trying to get them to do. And it’s moderate their behaviour.

So that’s all my alarms going off now. Excuse me, I can switch those off. This is good beeping by the way, not bad beeping, don’t worry. I’m not about to fall over. And much like the peer support that you will all receive over the next two days, the best thing that comes out of getting people together, the conversations, the connections you make, the things that you learn, those little side comments over a cup of coffee, you go actually that makes a real difference. And hopefully the context of this sort of presentation will give you the opportunity to ask those questions and be more detailed about your thinking of how you impact at a human level.

So moving on. How to and why to—who are the people that you need to engage to have the patients be more active. How do you address the individual, the groups, the communities, and have them both be interested in and want to adopt the use of technologies. What are the things that you can think about in everyday life that would affect you in the use of any kind of technology. And who are the stakeholders in that. Again, this is kind of the lexicon of business, the lexicon of healthcare and research, doesn’t translate into describing this to the six-year-old when you get home or describing it to your grandmother or describing it to your partner. These are also the things that we in business just don’t think about. We translate things into shareholder talk and the technical languages of our peers and it becomes part of our everyday talk. And then when you go home and you switch off, how was your day honey, oh it was okay, we talked about patient engagement. Well how did that go? We blurt out a bunch of technical speak. And then the other person just switches off and goes oh that sounds like it was really interesting. Yawn, another glass of wine?

[00:29:56]

So what can you do to make it meaningful? And in my view, certainly in the context of patients, is to talk about their lived experience in the context of their condition or multiple conditions. So it’s to ask the question rather than deliver the information.

So out of those groups of people, I’m guessing that you probably all think that you talk to all of those groups and that you have mechanisms for talking to all of those groups and you have—well we do that, we talk to parents, we talk to children, I mean we’ve got focus groups. So we get them in and we listen to what they’ve got to say and then they go home again. And how does that work out for you? How does that work out for them? How do you know? Do you do qualitative follow-up research on the focus groups that you hold and whether or not anything that they say is true to their lived experience rather than their collective experience as specialists in a room. Are those the professional patients that you always get, the same ones who turn up every time? The ones that are the most outspoken, the ones that have the view, the ones that are prepared to bang a drum? Or are they representative of the community in any way? What are the things that you would want to do with your research, with your product development, with your company’s future to engage with these people, if—and we go back to the opening statement—patients are at the heart of what we all do? If that’s being made true, how do you go about engaging with these groups of people? And this is just the start of the tale really. So these groups then break down into sub-groups and you get more and more acute specialists within each one. What would you want to do to make sure that you cover off and speak to and have valued input from the people that you seek to serve, seek to profit from, seek to make business out of, seek to grow a company out of and a reputation, a brand out of.

The active patient is a very difficult beast to find. A very very difficult beast to find. And that normal distribution curve of people living with any condition, the vast majority, 80% under that curve are not curious and inactive. And at one other end of the scale you have that 10% shifting towards the edge who are increasingly curious and motivated. And that curiosity and motivation can come from several different causes. It can be an intellectual curiosity, it can be a physical curiosity. I mean they might vary. It’s sometimes a need, an absolute need to have control over your condition. But for most of us most of the time, we hand off responsibility, we hand off control. We hand off power for our own health to people in white coats. The doctor tells you what to do, you read the instructions on the pill packet, and you do as you’re told. How many people have ever—well, you might be the exceptions to the rule in this room, I shouldn’t probably ask you lot this question—but how many people get onto Professor Google and research the products that they’ve been prescribed and research how they relate to the condition that they’re taking the for. Even if it’s something as simple as a headache tablet, is it necessary, do I have to take it, why is it being prescribed. What will the outcome be. Will it help me. Is there an alternative. Once I start do I have to continue. When does it stop. Is this the best way. What are other people’s experiences. What are the causes and effects of mixing this with something else. It says no alcohol, does it really mean that. Who has ever followed that piece of advice on the back of a packet of headache tablets. Mostly knocked down with a stiff drink.

So finding active patients is very very difficult, and it’s perhaps one of the biggest challenges for health researchers and for clinicians looking at trying to develop policy and programs that will impact in a behavioural context. Looking at developing policy, looking to develop services and products, education programs, that will have lasting and meaningful behavioural change consequences for that group is incredibly difficult. Because most of us, most of the time, are unaware and not curious about our own health. As I said, I think there may be a few exceptions in this room, given the context of the work that you do. So this isn’t a beat yourself up because active patients are difficult to find, it is recognize the truth of finding any group of people who have an active curiosity in an aspect of their own life, that isn’t their job. That isn’t a full-time hobby or full-time passion. And health, a bit like sex and religion, is one of those areas where you can find actively engaged people.

[00:35:06]

Again, part of the problem is that you then find that those that are most active are those that have the biggest drum to bang, and that doesn’t necessarily make them representative. So again, you find yourself in a bit of a quandary, how do you access a community of people actively engaged who have an interest but who don’t have an agenda, who don’t want to create a specific outcome, or who aren’t using it in a way to seek personal support for their condition, their issue, their misunderstood diagnosis by the healthcare system and they want a third, second, fifth, twenty-second, four hundredth opinion from somebody else. These are challenges for you. There are some answers, but these are challenges for you. how do you go about doing that.

So this moves me on to the opportunity to include people. How do you engage with people. What we’ve done with the Diabetes Online Community has been written up by a couple of universities now, including Joslin Institute in North America and the William Sansum Institute in Santa Barbara as the best self-managed peer-support community in the world. Which is quite an incredible statement, especially given that there is no vehicle behind it. Nobody owns it. There’s no bank account. There’s no company. It’s an idea, it’s a meme that has just taken off. It’s been adopted now by organizations like the International Diabetes Federation, which is a fantastic talking shot. Like most talking shots. But they represent on paper the interests of the global community, and they lobby all over the world. They lobby governmental levels, they're statutory consultees to the United Nations, the World Health Organization. So to have a vehicle like that adopt a program that has come from the community and then look to help deploy it globally is a fantastic thing to have been able to be part of and help achieve. And then using that as market access, using that as a mechanism for accessing millions of people in hundreds of countries to gather information, get input, ask questions. Nobody ever minds being asked a question. As long as your intent is true, as long as you declare your interests, which as companies and organizations and institutions, you have moral and ethical responsibilities to do, then the community will engage with you. It really will. It wants to. Hence our creation of the hacktivist community, that wearenotwaiting hashtag. We want to engage with companies, we don’t want to fight with them. We want to use your resources and the intelligence, the wisdom, the knowledge, the experience of people dedicating their lives to make ours better in the long term, and help you be better at what you do. I have a personal vested interest in this. We’ve looked at a lot of the health economics, and we know that, for instance the example of the Johnson & Johnson releasing a new drug, for a three-minute conversation with a GP, Johnson & Johnson are paying that salesperson 150 pounds, that’s the cost for three minutes’ worth. They typically think they get five, but they waste two of them saying hello and goodbye. They think they get three minutes of actual time to promote the new product before they are being whisked back out by the receptionist or the office manager and told that there’s somebody else in the queue, 150 pounds for three minutes. It’s not bad for a budget, eh. How many GPs in the United Kingdom. How many visits will each one of them get from the drug rep who is pushing the new type 2 diabetes pill. So how much will be spent just in the United Kingdom on GP visits in the next 12 months by a company like J&J pushing one product. Because that’s all that that salesperson will have time to do. And then just take that one country and then ask Johnson & Johnson how much did you spend on patient education this year around type 2 diabetes in the United Kingdom.

That’s one way of approaching it. And maybe there’d be some red faced and guilty executives in there. And maybe there won’t. But just think what you could do, integrating that kind of thinking and engaging the digital and online communities who have a need to know, a will to know, and a want to know, what products are out there, what they can do to use them within their lives to help have better outcomes for themselves.

[00:40:02]

So just to give you some of the numbers there, and also just to address a challenge that I was given by the NHS, just before they endorsed us two years ago as a safe and trusted resource for people with diabetes and healthcare professionals. They didn’t include industry professionals. I don’t think the NHS likes industry very much. I get that distinct impression. We had to sit down and spend half a day being interviewed by them and submit a lot of our work for due diligence and review before they would allow us, or before they would signpost what we do to other healthcare professionals and then to patient groups. And one of the questions they asked was, well this is all well and good but there are lots of charities out there that talk to patients and do education already, what makes you different? And we said, well first and foremost we’re not an organization. But more importantly, we’re ubiquitous. And they said well surely that’s only true in the context of technology. We said well yes of course. You know, if you have access to technology then you have access to the internet, and if you have access to the internet then we’re freely available. And they said, well what about hard-to-reach communities? I said well what do you mean? They said what about southeast Asians in Birmingham? They’re really difficult to get to, we’ve been trying for years. We’ve got education programs falling out of ourselves, we’ve got hundreds of millions of pounds invested in trying to reach communities. None of it works. I said, okay that’s a really good example. Well let me tell you, we have a tweet chat community in Nigeria in villages where every single person is functionally illiterate. Doesn’t mean they’re stupid, it just means they haven’t had the opportunity to go to school. But guess what. They’ve got 4G wireless broadband pretty much across the whole country. And we're putting out weekly tweet chats over mobile devices that they can unbox, switch on, and use within five minutes. Our program, this weekly tweet chat in Nigeria is now just been been formally adopted by the Nigerian ministry of health as the engagement and outreach program for delivering health messaging to communities and a mechanism for delivering health messaging to communities nationally. That's within 18 months of setting it up over there. No budget, no funding, purely driven by patients. Couple of smartphones, let’s talk about diabetes. And why has it been so successful? Well, in a lot of countries, as I’m sure many of you would appreciate, there’s still considerable stigma associated with any kind of illness, let alone a chronic condition. And diabetes in particular in most of the western world and now unfortunately increasingly in lots of other parts of the world is seen as socially unacceptable. If you read the Daily Mail any day of the week, I’m personally responsible for bankrupting most of the world's economy at the moment. But that’s okay, you know. I can live with that, I’ve got broad shoulders. But the purpose and one of the joys and reasons that we use Twitter is that we wanted it ubiquitous, it's free, secondly of course you can create completely anonymous handles. You can create a persona in there purely to discuss a medical condition. So you can be an MP on the front bench who got diagnosed with type 1 in the last 18 months and be very very very well known, you clearly couldn’t go online and bitch about how hard it is and what the issues are, and be identified. But you could if you do Twitter. You could be anybody. You could be anybody you choose to be, and  you can choose how much information you share, you can choose whether or not you allow any personally identifiable data to be shared. But also from the purpose and the context of patients, you can engage with people and you can say things about the institution that treats you, about the condition, about the products that you use, without any fear of there being a backlash. And people do fear these things.

So just to give you an example. Those are the different hashtags that we use. Obviously it’s pretty obvious. It’s country code followed by diabetesonlinecommunity. And these are the ones that—there are about 14 that I’ve been personally responsible for helping set up, and the rest are now self generating. The logos, the templates, everything we do is just all put together in a pack and off they go. People write in and say we want to create one in Russia, there you go here’s the pack, off you go. It’s up to you, it’s your country, you know the issues there, you speak the language, you know the local context, I don’t. I’ve no desire to go over there and set it up for you and teach you how to talk to your own community, that’s up to you.

[45:04]

And we tend to find this now talking to a lot of industry. You’ll find—again, I keep using J&J as the example, we shouldn’t do that, see, especially as I was over there giving them a talk just last week—they’ll set up a steering group and look at how to create marketing material that they want to then use globally. And then they’ll send it out to their franchised regions and ask them to have it translated and checked by a local focus group and then they’ll bring it all back to the middle and then they’ll rehash it, and then they’ll send it out again. And this always strikes me as a bit odd. if you want to engage with people in a community, surely the people in that community, the very best ones to know how to, what langue to use, what the issues are, what the local context is, what the current flavour of thinking is, rather than assume that government diplomacy still works and we can just park a big battleship off the shores and tell everybody what to do. There’s still an awful lot of institutional thinking like that. I’m sure many of you recognize it.

So again, the question is back to you. I’m expecting lots of responses by the way, because I have chucked out at least half a dozen challenge questions so far. The questions back to you are, what do you think patient engagement is, what do you think it’s about, why do you want to engage. I mean I know what the CFO would say. I know that the head of research would say. But why do you want to engage? Is it valuable? Is it a distraction? Is it a waste of time? Are you going about it the wrong way? What are the outcomes you’re looking for? And more importantly, clearly in the context of what I’m talking about, how is it going to make any difference to the people that you’re engaging with. Because if it’s purely to satisfy the needs of your company’s commercial needs, your role’s needs within that company, why put that person through it. Because you don’t pay them. Patients don’t get paid. Patients get asked to come along and talk, they get offered some tea and coffee, they get a bit of an honorarium maybe if they’re lucky. If they even think to ask for it. They’re not the ones in the room with the salary. So at its best, you’re exploiting their goodwill. And what do they get back? Where’s the feedback mechanism? Where’s the follow up? What’s the program that’s wrapped around that group of people you brought together and said this is why we asked you in, this is that we’ve done with the information, this is what we’re going to do with it next, yes we’d like to follow up with you, thank you for your help. Where is the one year later, two year later output that their input finally results in, and your follow-up mechanism says, remember when we spoke to you two years ago and we asked you this bunch of questions about A, B, and C, this is what we’ve now done with it. We could not have accomplished that without you. Where’s that value feedback loop that then continues to engage and builds trust and loyalty. No matter how small the questions, somebody has given their time to you to help you. And that has real value to the individual. So what’s in it for the patient? I didn’t put pound signs after that. What’s in it for them? People give their time because they want to, they want to help. I’m sure you’re the same. You would give your time. You give your time to your kids, you give your time to their school, you give your time to after school clubs, you do things in your community. You don’t do that if you get nothing back. You stop. You stop going down to that charity shop on the high street and volunteering because you’re unappreciated. Everybody does something because there's some value in it, even if it’s as simple as a pat on the back and a thank you and a cup of coffee and a piece of cake once in a while, because it makes us feel good as people. And people who feel good perform better. Happy people work harder happy people work better. Happy people think more creatively. Patients are the same. Make happy patients. Make happy products. Good thoughts, good deeds, good words. Not difficult.

So we’ve got about 15 minutes, I’ve had no questions. So I’m going to open this up to Q&A and have a discussion. Anybody?

[00:49:26]

MODERATOR

Thank you very much, Paul. I think that was a very powerful reminder, context setting of exactly what we’re kind of all trying to do in various ways today, fundamentally trying to do. I think that kind of sets the scene nicely for the next two days.

One big question that really stood out for me that you said to everyone is, why do you want to engage. And I think sometimes we feel we should engage because that’s what we’re told we should do. Everyone talks about patient centricity so that’s why we want to engage. I know personally, from the work we do in CRF Health, the reason we want to engage with patients is to ensure the solutions we build are intuitive, user friendly, low burden, they capture the data we want but in a way that doesn’t impact the patient unduly. So that’s the reason we want to reach out and contact patients. But I think it’s a very good question for helping us think about what it is we’re trying to do here, over the next two days, but also more generally in our day-to-day work. So I’d be quite interested to hear if anyone else in the room has an answer to why we want to engage.

PAUL BUCHANAN

Or challenge back. The lady there has a question.

AUDIENCE MEMBER:  Thank you for a really interesting talk. I just wanted to know how you feel about companies data mining through social media for patient outcomes. So they could be going into your sites, reading it, and gathering that information for their own use.

PAUL BUCHANAN

I think it’s a good thing. Data mining research, it’s going to happen, it’s a good thing. It should be done. If a company—so philosophically, from my perspective now having a vested interest, I guess I’m a gamekeeper turned poacher. Five years ago I wouldn’t even have thought about it. Now I think about the other side of that coin. Now I would say if you were data mining publicly available information sources like buying a license to mine Twitter or buying a license from Facebook to mine their data and it gave you insight into product or service development, then at the point of commercialization and taking it to market, and you were open and honest about how you sourced information, then that’s a tick in the box, that’s creating some transparency with the community that you’re then looking to put that product into. Better of course would be to create an engagement model with that community and say right up, we are looking to develop product and service in area X or do research in area Y, and part of our methodology is to engage with communities and engage with you through your use of social media. And then look to make that open and transparent. One, it gives you come instant credibility. Yes, you’ll create those that have a voice of dissent, that’s always going to be the case, but you will create far more who will have some genuine respect for the approach that you’re taking to that. And perhaps even better, as an organization that has the funding and the ability to buy those sorts of licenses, and both as I say the cash and human resources to do the research, to be able to publish some of that openly, if you derived benefit from public data, then it seems to me only right that you should publish that data back to the community and put it in a context and a format that can help and assist that community to better understand, better learn, better engage, then it can’t be a bad thing, right? If you’re doing it privately and quietly, and sneakily and looking to maximize your profitability, then that’s also fine because that’s how the world works. But don’t expect any trust or engagement with the community. Because they will find out. We’re everywhere. We are all patients in this room. You’re everywhere. How would you feel about that happening to you, your child, your parent, your partner. It’s exactly the same thing. So that’s kind of our view philosophically about the use of data. There’s some big data out there. There’s also obviously mapping the difference between building a biological model and using big data to test your hypothesis versus just data mining and using that to drive your predicted outcomes. So beware the dangers of that too, obviously.

AUDIENCE MEMBER:  Well let me add my thanks for a fascinating discussion. I really do appreciate that. My question is, in some disease areas you can’t really get a response from the patient. I’m thinking of Alzheimer’s or dementia. Is there any experience in working with carer groups?

PAUL BUCHANAN

Yeah, one of the consequences of having created these engagement models, in one sense it’s kind of inverted the standard entrepreneurial model of creating a product or service then going out and finding a community, a broad base to commercialize it from. Almost inadvertently what we’ve managed to do is create this phenomenally broad base, and then out of that have come more granular layers of need that have been identified within those communities and those needs have translated into products and services which we’re not delivering in terms of education. And some of that as a model, clearly, maps onto any other chronic condition, and more importantly, we’ve found it maps onto pretty much any medical condition.

[00:55:17]

So one of the things that we are doing, we’re working with a number of other societies, organizations, and looking at the use of technology to map things. For instance, in Alzheimer’s and dementia specifically, we’re looking at the use of technology as a mechanism for creating maps for people so that they can on a daily basis, press a button, press a picture, that says this is how I feel, this is where it hurts, this is what I’ve forgotten, this is what I’ve remembered. It’s very simple things, capturing data and then helping researchers that way. So you’re absolutely right. Also in terms of the management of the patient, so comparing and contrasting, say cancer with diabetes. Very crudely, you live or you die over there. And over here, if you’re lucky you live, and then you have to manage it for the rest of however long you live. In the acute world, you really do hand over all of your power to a team of people who specialize in making sure that you stay alive. And there is no way that any one of us could ever be, you know, the radiologist and the expert chemotherapy and the anesthesiologist and the surgeon and all of those teams of people that deal with you if you have, say, a cancer which then has to be treated. Whereas, in the chronic world, it’s typically a fairly simple diagnosis, and then it’s much more about you as the individual learning the tools, the skills, and the behaviours to better manage yourself. However, the world that we live in, most of that power is still associated with the men in white coats. So there’s a psychological difference too. Over here, in the acute world, you hand it over, you get fixed, it gets given back to you and off you go and you go back for checkups. And over here, you hand the power over because you’re sick. And then you’re told now it’s up to you to manage this, and off you go. And that transitional phase, for a lot of people, lasts their whole life. Because they never internalize then the management of their own condition and they’re not able to take on ownership and incorporate it into their sense of self. It’s still an external thing, which is the preserve of this group of people over here who I’ve given the power to, to manage for me. And that creates a kind of an instant pit, a downward spiral of non-compliance, non-adherence, bad behaviours, increasingly poor outcomes, and so on and so on and so on.

AUDIENCE MEMBER:  So you are very successful in creating online communities. I guess these are not the only attempts. So what are the keys for success?

PAUL BUCHANAN

So, good question. So there are—there have been, and there is a broader—in the sense of the Diabetes Online Community, there are—it’s broader than just the tweet chat stuff that we’ve created, that I’ve set up. There are blogs and there are websites and there are 501(c) organizations, mostly in America, there are quite a lot of them. There are lots of disparate groups who are all trying to do positive things to engage. Typically their life cycle is no more than five years. Most of them seem to last about three years. Most of them immediately go out and try to build infrastructure, and also immediately go out and try to find funding, especially in North American context, there’s a very different attitude to both charity and structure than we have in this country and in Europe. So part of the problem is that they try to set themselves up as de facto organizations with infrastructure, with hierarchy, with funding, and as soon as you start to try to find funding, you obviously then need to have a legal vehicle that can accept it—bank accounts, lawyers, solicitors—and overhead then starts to build up. And very few people are competent in building those sorts of organizations and sustaining them, when the output is being given away. If you’re not generating an income from your consumer—in this case your community—you’re giving your product away and in fact, how can you make it sustainable. So you create an imbalance between your delivery mechanism and the income, the inputs required to stay there, which is why they typically fail.

[01:00:05]

I think where we’ve been successful, is it was never envisaged as an organization. It was never set up in the first instance to be more than—I suppose quite selfishly—more than an opportunity for me personally to learn from as many others as I could find about how do you do this. You know the hints and tips, what happens when—what happens when you go to the loo and you’ve got your pump in your pocket and it’s attached to you here, and you’ve only got 75 cm of tubing and you forget. We’ve all been there, right? Well maybe not with a catheter attached, but you know, ta-da, then you stand up, sit down and then it goes ping—oh no not again. And then you have to do lots of bits of blood spurting all over your shirt, it’s a bit messy. So all those little things, where do you learn those tips, because the doctors don’t tell you, right. No one tells you about that sort of thing. So setting it up from the beginning. One, using Twitter and social media as a platform, so there was no need for anybody to register, there was no need for me to capture any data, there was no making lists, no email addresses required. And then two, making it totally transparent, as in there is no funding associated with it whatsoever. The website that supports the tweet chat is completely clean. Our rules don’t allow for any product placement, there’s no advertising, we’ve got some very very simple ground rules, and it’s about the community talking to the community. Within a year, we’d grown from the first month 3/4 of a million impressions. By the end of the first year, I think we were over 30 million impressions, with tens of thousands of people uniquely engaging. So there’s the community built trust in itself. Because this was a community that the avatar that set it up, the user name wasn’t Paul Buchanan runs gbdoc. It was gbdoc running gbdoc. So the community very quickly adopted it as their platform. So it built trust in itself. And I think that’s what continues to drive, not only the original success of gbdoc, but then the ongoing success of all of the others. There’s a kind of global understanding that this is all of our patients. Doctors and researchers and industry. You can all come along and watch and you can even join in and answer questions if we get things wrong. But this is our place and our space and we very quickly know if you’re one of us or if you’re lurking with intent. And then beware, because the positive side of 3/4 of a million impressions made in an hour, is that you can do an awful lot of damage to a brand or a reputation if somebody tries to abuse the community. And it’s very self-leveling, much like Wikipedia.

Yes, another question at the back.

AUDIENCE MEMBER:  Yes, just a quick question. Knowing that the platform is the patients’ and we definitely don’t want to intrude, what do you think is our best way to actually engage with the community as a whole, as the outsiders?

PAUL BUCHANAN

Well specifically in this context, so part of kind of the rules, the what-we-are-about thing on our website says first and foremost this is a place for us. It’s a place for us to have our discussions and to voice our opinions. And you may not like it, but please respect our opinion. If you’re an industry professional or a healthcare professional and we say something that’s factually incorrect, please do correct us, we value your input, we like you being there. We we know that we are watched and observed live every week by thousands of healthcare professionals and industry professionals. And I know this because one of those companies sends me a copy of their Monday morning management report, which always has in it a synopsis of that week’s discussion on the gbdoc. They use what we talk about each week as a thermometer for what’s going on in the diabetes community at the moment, because we tend to talk about current things, we talk about a list of topics. Now, we—or I—specifically appreciate that greatly. Because they’ve got the honesty to say what you do is important, what you do helps us, and here’s the output of what we talk about when we talk about you. And they share that with me. Now I don’t share those meeting minutes with the community, but I do share with the community that we are observed by a bunch of these companies, they are genuinely interested, and they do engage with us. That leads us to all sorts of other interactions and opportunities, not just for us as an organization, but then for—

[01:05:01]

So when I say for us  as an organization I mean Team Blood Glucose, which is the body that I set up, the legal vehicle, the not-for-profit, which now funds in its entirety all of the work of all the docs. Sorry, I forgot to explain that link between the two. And that’s how we can be contacted formally, because that is a legal entity, it is a trading vehicle, so it can do things. But yeah, I would encourage healthcare professionals, academics, institutions, anybody to engage. And the best way, jump into a conversation. Introduce yourself, say hi I’m Joe Blocks from Organization ABC, and I’m really interested in this conversation. Is it all right if I sit in and listen. Is it all right if I ask some questions. The community is very very engaging.

MODERATOR

Maybe to build on that and to end on a slightly more challenging note, obviously the focus is on the industry being patient centric, and I think we all agree that’s right. What are you doing to be industry centric? What are you doing to make it easier for the industry to engage, to give industry that access that we do crave, but I hear again and again, people saying they want to be patient centric, they just don’t know how to do it. So what are you doing to be industry centric?

PAUL BUCHANAN

Yeah. So one thing. Prior to diagnosis, I’d never engaged in health in my life. It’s not my  background. Other than this now, I’ve never really been ill. I’ve never had to have an operation, and I’d never been into a hospital, never needed to engage with doctors and nurses and associated industry professionals. So there was a huge learning curve, and in that context, academics and clinicians who work in and are associated with it. So there’s been a huge learning curve for me and therefore for our organization in how to engage. And one of the things I rapidly discovered is that unlike in my background, in the very fast moving, coarsely driven profit-orientated software business, health works very very slowly. I mean, we’re talking comparatively glacial. And pharmaceutical industries are so heavily regulated that for them to engage with a patient group takes three years of setting up. They have to refer to AVPI regulations in this country and God knows who else’s in any other jurisdiction. So multi-franchise or international work is increasingly complex. And so I’ve learned that it takes time and therefore it’s going to need to be a slow burn and strategic approach to engaging. And you can't just go out as an organization and go come and talk to me. One, because you don’t have the budget, cash, or human resources to be able to do that kind of promotional work, but two, it’s also not appropriate I think if you want to have long-term sustainability and long-term credibility. So we’re taking the view that what we need to do is focus on our mission which is patients, focus on our purpose which is providing education, access, and opportunity for our community, and eventually governments, healthcare systems, institutions, academics, providers will find us and come to us. So in exactly the way that you guys found me and asked me to be here, that’s how we’re now approaching going out to create credibility and to create a statement of competency in what we do as a community. And hopefully address some of the concerns, in fact a majority of the concerns, that industry has about engaging with patients. Create an organizational opportunity for organizations to be representative and to be open and transparent about what we do, so that you as organizations and as individuals within those organizations can go, actually if you wanted to speak to somebody in that space, you should go talk to Paul, because if not him, he’ll know somebody in any one of those countries through the community that we can engage with who will be reasonably sane, not have a massive personal agenda, not be talking about their personal story the whole time but talking about the issues within a community. And so we’ve created if you like a—or we’re trying to create—a brokerage if you like, through the activity that we do, through the doc, and through Team Blood Glucose which can act as a clearing house to bring together other organizations, institutions, healthcare professionals, academics, clinicians, etc. Now our way of doing that is to focus it around activity, around a shared experience, around team activities. So the big events that we do, cycling across Europe, the big sailing things, the big walking things, the activities that we do, the park ones that we do every Saturday morning up and down the country will get people together and talk to them in their context, in their local area, and help them, and demonstrate, we hope, that we are people that you can talk to and engage with. But it does take time.

MODERATOR

I think that’s a good place to leave things. So I just want to thank Paul for a very powerful and enlightening presentation.

[END AT 01:10:23]

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