Thinking beyond boundaries: the Making More Health podcast series

Opening sting: Thanks for taking the time to listen to this podcast, brought to you by the NHS Confederation and Boehringer Ingelheim.

Michael Wood: Hello, and welcome to "Thinking beyond boundaries: The Making More Health podcast series." My name is Michael Wood and I'm the head of health economic partnerships here at the NHS Confederation.

Making More Health is a long-term initiative with a goal to improve health in communities around the world, by identifying and supporting the most promising solutions to challenging health problems. Since 2010, Boehringer Ingelheim and a non-governmental organisation, Ashoka, have worked together in a global partnership to support social entrepreneurs create change for good.

Throughout this podcast series, I will be interviewing a number of Making More Health fellows. Celebrating their achievements, discovering what drove them personally and discussing the particular role social entrepreneurs play in fostering long-term change. Through the podcasts, you will learn how the fellows are standing up for those who don't currently have a voice, shaking up the system to create new models of care, empowering patients and protecting the planet.

This series aims to inspire you to think about your own potential to create change. So let's kick off with the first guest of the series, Andrea Coleman. Andrea is the founder and chief executive of Two Wheels for Life and a co-founder of Riders for Health, and a member of the Making More Health fellowship since 2014.

For over 20 years, Andrea has focused on solving a seemingly simple key component of rural healthcare delivery: on-the-ground transportation. Through a series of partnerships with government institutions, Andrea has designed new ways of bringing health workers to where patients are; built local expertise and supply chains for transport and maintenance; and dramatically improved healthcare reliability. Her work in driving transport up the government's agenda in Africa and beyond, removing a crucial barrier for effective development as a whole.

Andrea, welcome to today's podcast. Can I first ask you just to say a few words about the work of Riders for Health?

Andrea Coleman: Thank you so much for inviting me to this podcast. It's wonderful. Riders for Health focuses on something that really is a very, very neglected area of development, and that is transport. And especially in rural areas.

And when it comes to healthcare, it's so critical to get healthcare, health workers, services and goods out to rural communities. It's neglected for so many reasons, but nevertheless, if it isn't attended to, everything grinds to a halt.

Michael Wood: How does a former motorcycle racer get involved in international healthcare? What inspired you to set up Riders for Health?

Andrea Coleman: It's a really interesting journey. I'd been raising money actually, to focus on Africa for some time, because I was bewildered by the reasons for the ill health and poverty in Africa when it's so rich in resources and rich in people with great abilities.

But then we were invited to visit Africa and saw women being taken to hospital in wheelbarrows when they were in labour. Children shivering with malaria who were not very far out of capital cities, but nobody could get out there for treatment.

But back in Ministry of Health car parks, there were broken vehicles: four-wheel vehicles, ambulances, motorcycles. And we thought, really? What we do, we're very familiar with very sophisticated machinery in motorcycle racing and in motorcycling, how could it be that people, hundred years after the internal combustion engine has been developed, are still dying and suffering because nobody can reach them because of broken vehicles.

Drug development goes on so fast and people are developing drugs, both for old diseases and the newer ones that come along. And there is highly trained health workers in ministries of health across Africa. But if those drugs and those health workers can't get out to their rural communities, people just die where they are, of easily preventable and curable disease.

Michael Wood: Engaging communities is something you're talking about really strongly there Andrea. Yet, it's something that statutory organisations often struggle with: we can be slow, perhaps, and complex, and we expect people to come to us. How did you go about winning and maintaining the trust of the people you were working with?

Andrea Coleman: The people that we mobilise are highly trained health workers. And what I think is the key to that is that these are local people. They know the terrain, they know the people. They often come from villages, remote rural communities, themselves. They speak the language of those people and they understand the needs. And this isn't people coming in and rolling up their sleeves and saying "move over guys, we can sort this out." This is local people who really understand the communities and what they need. And the sort of voice that the communities will respond to. So much of what's needed is around the area of pre and postnatal care.

People often think that a drone or a mobile phone can really help with getting access to healthcare for those rural communities. But when you think about childcare pre and postnatal care, you need a person to see that person and be with them and help them through what they're going through.

So, one of the things that I think is so critical to point out, or to remind everybody, is how important people are to people and to get highly trained health workers out to those rural communities is really critical. There's a story that someone expressed really beautifully, the director of our programme in Malawi. She said silence is always said to be golden, but for a community, if they hear the sound of a motorcycle coming into their village, they know that's the health worker and that's somebody that's come to help them. They're not isolated, they're not remote. And they have access to healthcare, which is so important to them and their families. And it's really stuck in my mind because so many of those communities feel neglected, forgotten, remote, having no way of accessing healthcare, other than walking for maybe six hours to a health centre, where they may have to wait for days for healthcare.

Michael Wood: One part of Riders for Health, the model, which I'm really interested in Andrea, is that it's run by the nationals in the countries you work in. Is that delegated model something you always had in mind, or was it something you evolved over time?

Andrea Coleman: We set that in place when we first established Riders for Health more than 30 years ago for mainly two reasons. One is that unless it's run and managed by the nationals of the countries in which it runs, it's never going to become deeply rooted. It's never going to be owned by the people of that country and to be part of it's health system fabric. And the other principle that we always drove very hard is that rather than importing the sort of gender imbalance that there happens to be in anything to do with the automotive industry in the developed world, that men and women should both be trained as riders, drivers and mechanics.

Michael Wood: Clearly the values that are at the heart of the work of Riders for Health are clearly your own values, Andrea. And I just wanted to talk about the Making More Health fellowship, which has supported Riders for Health, in which you've played a big part in. How has that supported you through your own journey?

Andrea Coleman: It's a funny thing to say but being part of the fellowship, the important thing is actually the fellowship. And learning from others and listening to others and being part of a community of social entrepreneurs that are addressing health issues. I mean, there are social entrepreneurs in all sorts of areas of education, livelihoods, environmental issues and so on, but being part of a health group is very encouraging and supportive. We learn a lot from each other, but also because the company itself helps us learn things. We've got a lot of learning from the company and from the fellowship. So, it's very hard to underestimate the importance of fellowship, particularly in the healthcare sector when you're really struggling on your own to fight your corner, but knowing that others are fighting along there with you. But also you can see the need for a health system end-to-end and where the gaps are and how you're going to fill them. And you can't do that alone. You can only do that with others. So it's hugely valuable to us.

Michael Wood: Just in reflective mode here, Andrea. We've heard so much from you, this podcast, and it's such a fascinating story what you're doing delivering on the ground in Africa. What are you most proud of?

Andrea Coleman: I was born into the motorcycle communities. It's an entity, a body that I know and understand. I find I watch Moto GP all the time. I love it. I really love racing. But it is without doubt going around and round in circles. I mean, that's literally what happens in motorcycle racing. And I'm very proud that we have a whole sport, I mean really a whole sport, focused on mobility for healthcare in Africa. I'm hugely proud of that. That I've been able to kind of support that community into supporting that really neglected part of development.

Then I'm also proud that looking around at the programmes, how much they take on the leaders of those programmes, how they built each of their organisations, how well they work together, the impact they have on healthcare. There are women who would have died in childbirth, children that would have died with malaria and in childbirth.

I mean people's lives have been saved, and at the moment, in terms of pivoting what we do in Riders for Health to address COVID in rural communities, how we pivoted in 2015 to address the Ebola crisis in Liberia. And also, my husband and I have worked very, very closely together. And I'm very proud that we've done that for 30 years and remained together and we didn't get a divorce. Because it would be very easy to work so closely with someone, bringing up your family, to find the stresses and strains and the kind of differences in how you think, and I'm proud of that. I'm proud that we have managed to navigate that ourselves.

Michael Wood: It's fantastic. It’s a passion you both share. It's fantastic to hear about, Andrea. And finally, and I'm thinking now from a perspective of a budding social entrepreneur, listening to you talk about marrying passion with delivery on the ground and changing people's lives. What one piece of advice would you give them as they try and understand how they might go about realising their own ambitions?

Andrea Coleman: I'd say keep focused. Focus is absolutely key. Work in partnership, work with the government of those countries, because they're the people who run those countries. You can't run in parallel. But take care of yourself because it's so easy as an entrepreneur or a social entrepreneur to forget that you exist and that you should look after yourself. And always think about the future leadership. Start thinking about the leadership of the future from the moment you begin, don't think I'm going to live forever and I'm going to want to do this forever.

Just think about your succession and your plan. And also make sure that you have a really good and supportive board.

Michael Wood: Andrea Coleman, the founder and chief executive of Two Wheels for Life and the co-founder of Riders for Health, it's been a pleasure talking to you. Thank you for your time today.

Andrea Coleman: Michael, thank you so much. It's been a real pleasure.

Michael Wood: In the next episode, I'll be catching up with Dr. Mohammad Al-Ubaydli, founder and chief executive of Patients Know Best. We will explore how a patient's understanding of their own condition can help create a better diagnosis.

Mohammad Al-Ubaydli: Everyone tries to figure it out. Everyone tries to do something by themselves, thinking the rest of the system is there. It's just them who is unusual. Actually, it's the act of being a patient that makes you the expert.

Michael Wood: And I will find out from Mohammad the benefits and drawbacks of health digitalisation, and how a balanced approach best suits a wider range of patients.

Mohammad Al-Ubaydli: For the most part, what we find is that digital is a bridge, not the divide. But that is often a counter-intuitive statement for most people in the healthcare system because they associate digitisation with the healthy and wealthy, and they say that you're excluding people.

Michael Wood: Thanks for listening.

Opening 

Thanks for taking the time to listen to this podcast, brought to you by the NHS Confederation and Boehringer Ingelheim.

Michael Wood 

Hello and welcome to the second episode of the Thinking Beyond Boundaries: the Making More Health podcast series. My name is Michael Wood. I'm the head of health economic partnerships at the NHS Confederation.

Today I'm joined by Dr Mohammad Al-Ubaydli, the founder and chief executive of Patients Know Best.   Mohammed trained as a physician at the University of Cambridge, worked as a staff scientist at the National Institutes of Health, and was a management consultant to US Hospitals Advisory Board Company. Mohammed is the author of seven books including Personal Health Records: a guide for physicians. He's an honorary senior research associate at UCL medical school for his research on patient controlled medical records. In 2012 he was elected an Ashoka Fellow as a social entrepreneur for the contributions he has made to patient care. Founded by Mohammed in 2008m Patients Know Best has been part of the Making More Health programmes since its inception.

Mohammed, welcome. Can I first ask you to say a few words about the work of Patients Know Best.

Dr Mohammad Al-Ubaydli

Thank you. It’s lovely to be on this podcast. Patients Know Best provides you with your medical records, and lets you understand your health, look after your health, and also the other people helping you look after your health can do so more safely. And it basically started from my experience as a patient. When I go see my doctor, I'm often the one telling him my situation: my disease as is unusual for most doctors. And so the more information I have, the more I can help him as he's helping me. So, the idea was to just bring this to as many people as quickly as possible. That's the idea behind Patients Know Best we want people to have that understanding and ability.

Michael Wood 

What do you feel was missing in the health system that you experienced as a patient that you thought was something that you could try and fill?

Dr Mohammad Al-Ubaydli 

What I'm going to describe to you is very difficult for most people to believe until they get sick. And then once they have been experienced the healthcare system, they all nod their heads vigorously saying, 'Yeah, that's exactly what happened to me. I thought it was just me. It's mad that's what's happening.’ So basically, all the wonderful advances in medicine, in healthcare, have happened from specialisation.

So, you used to have a doctor, and then you had a surgeon, and then you had a heart surgeon, and you have a children's heart surgeon and so on. And these people do miraculous things saving people's lives. But the path to specialisation also means they understand more and more about less and less of you.

As you go and get help from different people - the surgeon here, the physiotherapist there, and so on - each of them knows very little about you, and there's nobody else joining the patient. Often it ends up being the patient.

So if you ever get to the doctor and you find yourself repeating something to them, that you told somebody else and you thought, well I thought they'd tell you, they didn't tell them. Or even you're repeating something that you had told them before and they seem to forgotten, it's because they've got so many other people to look after that they didn't know and they didn't remember.

And then, of course, the biggest advance in the last 20 years is the newest specialist which is the patient. The majority of healthcare spending is on diseases, with a person doing most of the work; most of the time is the patient. If I have a heart attack, I would like a doctor doing the operation but in between the operation it's me, taking the medication, doing the exercise, changing my diet. So those things, if the patient is now a specialist, doesn't understand and have the tools to manage themselves, then all of that work by the surgeon or the doctor and so on is wasted.

And that's basically healthcare: all these people who know very little about you and you doing most of the work for yourself, and across every encounter the information doesn't travel, which is not safe, and expensive, and frustrating. And so that's what we're about. Let's make all the information be with the patients so that they understand their own situation and can help themselves, when they need help from the other people that also have all the information and also have all the understanding.

Michael Wood 

Is this something that struck you during your medical training, Mohammed? Or is it more your experience as a patient on the other end of the health spectrum that has made you think about this issue?

Dr Mohammad Al-Ubaydli 

I will say that my mother thinks it should be called Parents Know Best, because she went through that experience trying to look after me with my serious condition and explaining things to all the different doctors until she got the right treatment. It's not that you have to go to medical school and in fact, I mean for me, I thought about this systematically when I was writing a book about it in the States for my customers is US hospitals. I was writing it, I was thinking this would have helped me so much as a patient and now I understand why my doctors listen to me and do what I tell them to do, in the appointments. I thought they trusted me because I've gone to medical school. And I realised that writing the book they actually trusted me because I've gone to all the appointments, which is what every patient does - you end up being the de facto keeper of the knowledge, the integrator. And so, why don’t we, but we haven't been given the tools to do so. Everyone tries to figure it out, everyone tries to do something by themselves thinking the rest of the system is there. It’s just them that’s unusual. Actually, it’s the act of being a patient that makes you the expert.

Michael Wood 

What is the reaction from your fellow clinicians? Let's start with the clinicians when you speak to them about this issue.

Dr Mohammad Al-Ubaydli 

There are three types. About 5 per cent of them say, ‘yeah, patients do know best. When a patient comes to me, I ask them to tell me what's happening and I listened to what they say. They know more than I do.’ About 20 per cent say, ‘you are mad, this is wrong.’  And the rest of them think that, I'm incorrect, but fine. Whatever works.

What I hadn't predicted when I started, everyone said 'oh, the people who would understand this would be the young doctors, the new generation. Actually, the 5 per cent are often the oldest doctors, and it took me a while to understand. But basically, the more that you know, the more comfortable you are with other people also knowing. You're not threatened by it, and you work quite nicely with those people: you're confident in your knowledge and you use the knowledge of others. And so often it with the doctors at the top of their game the specialists, heads of departments and so on who say, ‘yeah that's how I act with my patients’. And often it was the junior doctors who are the most anxious about it because they still don't feel confident, they still don't know very much and if the patient turns up, and demonstrably knows more than they do. They're a bit anxious by that. They shouldn't be, they should embrace that and make use of the patients, they're on the same team, but that's often what makes them uncomfortable.

Luckily that 5 per cent are at the top of their game are often the influences in the deciders. So in the beginning, PKB was really built by excellent physicians and nurses, who are at the cutting edge of doing the right thing for patients, and they we were the ones that were pushing, often against the rest of the system, to say this is the right thing to do. I'm going to put my own budget to make this happen and I'm going to work with my patients to get this up and running.

Michael Wood

COVID is still here of course but we've seen in the past 18 months in this country, I'm sure it's the same in other health systems, the rapid digital advancements in the provision of healthcare. Do you think this appetite for digital delivery is shared by the public?

Dr Mohammad Al-Ubaydli 

I think the problem with how digital has been done in COVID is we've gone from ‘digital isn't possible’ -‘you know I can't do my consultation safely without you coming too’ – to digital is the only possible thing. I think we're proving the point that now digital is possible: everybody that said it was impossible was incorrect.

So now we have a full spectrum of tools and there are sometimes when I need to lay my hand on you as a physician and examine you; sometimes when I need to be with your family and sometimes when remote actually is the fastest and safest way to get care. So, the frustration from the public is from this being all or nothing.

I think plenty of people in the public before COVID were frustrated that they couldn't do digital with their clinical teams. There are lots of situations where it's useful. Now I remember, outside the hospital. At the bus stop, I was waiting with this guy on a wheelchair, and it’s an excellent hospital, a national centre, and I was asking him about you know his visit and he basically said, ‘I love my doctors, I love being with them but me traveling to them is about a day's travel and back, and for days afterwards, I am in pain. Just the physical act of travelling, and they don't need to examine me, I just can't get to talk to them without coming’. If you have cystic fibrosis patients, and you put them in a waiting room, they give each other infections. There are lots of scenarios where remote treatment is not just convenient, it's necessary and useful. It's just COVID made it go from nothing to all. And that's not right either. So what I'm hoping is that as we now shift away from the all or nothing. We now have all these tools we know what they do. Let's get the best combination of things for the best care.

Michael Wood

You are right. The pendulum swings doesn't it and hopefully it settles somewhere in the middle and on that issue. Something that's really come to light, we've seen the inequalities that exist in communities, that COVID has shone a light on and certainly digital literacy is one of those, isn't it Mohammed? I'm interested in how you support parts of the community that we struggle, and it's our job to engage them, but we struggle to engage them with and how you approach the issue of digital literacy in a way which actually might have wider implications and opportunities for us as health service providers.

Dr Mohammad Al-Ubaydli 

For the most part, what we find is that digital is a bridge, not a divide. There are some exceptions that I'll tell you about in a second. But that is often a counterintuitive statement for most people in the healthcare system because they associate digitization with the healthy and wealthy, and they say that most people, you're excluding people. But if you look at for example, what we did with one of our sites, they analysed the people who had records in the systems, so all the people being treated by the hospital versus the people who register for the system

The mean age of someone being treated is 51, and the mean age for someone registering is 49, so pretty much the same as not only the young, who use the system. There's no gender disparity either, they also analyse socio economics based on the postcodes, and for all apart from the poorest 10th decile, the poorest 10 per cent of people, the registration rate was similar to the treatment rate. But the poorest 10 per cent had lower registration rate, so that one does have to be compensated and part of digital is that it frees up capacity to focus on the vulnerable because it increases productivity for everybody else. For ethnicity, it was also similar. This was not what they expected but most ethnic backgrounds, had the same access as treatment, except people from Africa, or black African or black Caribbean backgrounds. They had about half to three-quarters of the registration rate as you expect from treatment and so that one requires some intervention.

But on the flip side, the system works in 22 different languages. There are people who don't understand what's being said in the appointments in English, but when they have it on their phone and translate it, they can understand it and when they have it with their family to translate for them they can understand it. It works on any device with an internet connection and the phone is more powerful than the desktop you have in the NHS. It's available to the patients and homeless people have phones - they don't have a home, but they do have a phone. One of the first family to use this in Great Ormond Street Hospital was a homeless family, and they didn't have a home to get the letter about the child, but they would go to the library and message their doctor. So I think is a bridge, but there are certain environments where you have to have some intervention around that.

Michael Wood 

Lots of critical agendas now on the top of our priority list. You know sustainability, is at the top of our priority list. Very conscious that this is an important part of what Patients Know Best is looking at, you know you're capturing carbon emissions as part of the patient journey, etc. Why did you feel this was such an important part of what your organisation needed to focus on?

Dr Mohammad Al-Ubaydli 

So healthcare is about 5 per cent of the carbon emissions globally. About 5 per cent of all cars on the road right now, are NHS related. Whether it's a patient travelling to the hospital or the ambulance or the doctor and so on. So this really good work that's being done, has a really bad impact on the environment, so we have to figure out how to manage that.

On the flip side, what I find really interesting about technology, is digital allows dematerialisation right. So if you look at carbon emissions, and use of materials and so on, over the last 20 years, there are plenty of cases where they've gone down. I don't mean there's no climate change, we'll be fine. I mean this as there are things that work. Can we please do them a thousand to a million times as much, because we need to do for the planet and digital as part of that. If I can send a message digitally rather than a letter that saves carbon. If I can avoid travelling to the doctor, because I've got a video call, doesn’t always work, but when it does work, that's a lot of carbon avoided. If the doctor can monitor me remotely and intervene sooner, then I avoid getting sicker, and I avoid the operation. That is a huge amount of carbon, it’s just forgetting that wonderful results for the patient of avoiding surgery, the carbon impact is also extraordinary. It's the kind of thing that benefits the patient benefits the healthcare system, and it benefits planet.

Michael Wood

A question I'm asking on all the interviews Mohammed is, you have so many achievements we have spoken today about what you've changed in the past, what needs to happen going forward. What are you most proud of as a clinician, as a patient as a social entrepreneur?

Dr Mohammad Al-Ubaydli

I'll tell you a story from Sunday. One of my colleagues called Katie. Apparently, her street had a party. My street doesn’t have parties, I’m quite jealous but they had a party and she met this 32-year-old lady who's got ovarian cancer. And she starts telling Katie about her treatment. Katie is a nurse, and she's being treated in London so Katie says to her, 'oh you're in London. Did you know that you can get access to your test results, your record?' And she goes, 'oh yes, definitely. They have the system called Patients Know Best, I have registered. Let me show you.' So she starts showing her around the record and Katie is politely listening, then she says Katie, 'so how do you know about Patient Knows Best?' And Katie replies, 'well,  because I work there.' And she gave her a hug. She was like, ‘it's the best thing ever, really helps me get the information. Sometimes I get stressed because well I've got cancer, but I can get myself together for my appointment, it really helped me to know this information immediately.’ A million test results, are seen by our patients every week. They just know things they never got to know beforehand that kind of stuff just gets me really happy.

Michael Wood 

It's a wonderful story Mohammed and it is so important, isn't it, to hear those stories and to remind yourself of those stories, in terms of what we're trying to achieve and your mission and going forward. Final, final question. I suppose, I'm thinking from the perspective of budding social entrepreneurs listening to this podcast, listening to you speak about how you developed your idea, the steps you've taken, the directions you've taken, what one piece of advice would you give them as they grapple themselves with the challenges of they realise their ambition?

Dr Mohammad Al-Ubaydli 

Find other good people to work with, because if you're anything like me, there's a ton of gaps that you need other people to help you with. And then sequence your plans to begin with as little cash as possible because systemic change requires a long time for decisions.

Michael Wood 

Dr Mohammad Al-Ubaydli, founder and chief executive of Patients Know Best. It's been an absolute pleasure talking to you. Thank you for your time.

Dr Mohammad Al-Ubaydli 

Thank you, Michael. I've enjoyed it.

Michael Wood 

Join us in the next episode, where I'll be talking to another social entrepreneur Anil Patil. Anil will join from his vast experience as the founder and executive director of Carers Worldwide to explain the importance of providing support for our carers, and their families.

Anil Patil 

All of us, all of us, on this planet one day or another, will become either carer or somebody will be caring for us during our lifetime. You cannot achieve sustainable development goals without involving or inputting carers into it.

Michael Wood 

Anil will also share his personal story about his daughter and why this inspired him to become a social entrepreneur.

Anil Patil 

When our second daughter was born, we discovered she had Down’s syndrome. It was quite challenging, quite difficult in the beginning, but if there wasn't a support from friends and families and professionals, I don't think we would have coped well.

Michael Wood 

Thanks for listening.

Coming soon