You can't care for patients, you're not human!

We're are facing a new dawn, as machines get smarter. Recent advancements in technology available to the average consumer with a smartphone are challenging many of us. Our beliefs, our norms and our assumptions about what is possible, correct and right are increasingly being tested. One area where I've been personally noticing very rapid developments is in the arena of chatbots, software available to us on our phones and other devices that you can have a conversation with using natural language and get tailored replies back, relevant to you and your particular needs at that moment. Frequently, the chatbot has very limited functionality, and so it's just used for basic customer service queries or for some light hearted fun, but we are also seeing the emergence of many new tools in healthcare, direct to consumers. One example are 'symptom checkers' that you could consult instead of telephoning a human being or visiting a healthcare facility (and being attended to by a human being), and another example are 'chatbots for mental health' where some some form of therapy is offered and/or mood tracking capabilities are provided.  

It's fascinating to see the conversation about chatbots in healthcare being one of two extreme positions. Either we have people boldly proclaiming that chatbots will transform mental health (without mentioning any risks) or others (often healthcare professionals and their patients) insisting that the human touch is vital and no matter how smart machines get, humans should always be involved in every aspect of healthcare since machines can't "do" empathy. Whilst I've met many people in the UK who have told me how kind, compassionate and caring the staff have been in the National Health Service (NHS) when they have needed care, I've not had the same experience when using the NHS throughout my life. Some interactions have been great, but many were devoid of the empathy and compassion that so many other people receive. Some staff behaved in a manner which left me feeling like I was a burden simply because I asked an extra question about how to take a medication correctly. If I'm a patient seeking reassurance, the last thing I need is be looked at and spoken to like I'm an inconvenience in the middle of your day.

MY STORY

In this post, I want to share my story about getting sick, and explain why that experience has challenged my own views about the role of machines and humans in healthcare. So we have a telephone service in the UK from the NHS, called 111. According to the website, "You should use the NHS 111 service if you urgently need medical help or advice but it's not a life-threatening situation." The first part of the story relates to my mother, who was unwell for a number of days and not improving, and given her age and long term conditions was getting concerned, one night she chose to dial 111 to find out what she should do. 

My mother told me that the person who took the call and asked her a series of questions about her and her symptoms seemed to rush through the entire call and through the questions. I've heard the same from others, that the operators seem to want to finish the call as quickly as possible. Whether we are young or old, when we have been unwell for a few days, and need to remember or confirm things, we often can't respond immediately and need time to think. This particular experience didn't come across as a compassionate one for my mother. At the end of the call, the NHS person said that a doctor would call back within the hour and let her know what action to take. The doctor called and the advice given was that self care at home with a specific over the counter medication would help her return to normal. So she got the advice she needed, but the experience as a patient wasn't a great one. 

Now a few weeks later, I was also unwell, it wasn't life threatening, the local urgent care centre was closed, and given my mother's experience with 111 over the telephone,  I decided to try the 111 app. Interesingly, the app is powered by Babylon, which is one of the most well known symptom checker apps. Given that the NHS put their logo on the app, I felt reassured, as it made me feel that it must be accurate, and must have been validated. Without having to wait for a human being to pick up my call, I got the advice I needed (which again was self care) and most importantly I had time to think when answering. The process of answering the questions that the app asked was under my control. I could go as fast or as slowly as I wanted, the app wasn't trying to rush me through the questions. On this occasion, and when contrasting with my mother's experience of the same service but with a human being on the end of the telephone were very different. It was a very pleasant experience, and the entire process was faster too, as in my particular situation, I didn't have to wait for a doctor to call me back after I'd answered the questions. The app and the Artificial Intelligence (AI) that powers Babylon was not necessarily empathetic or compassionate like a human that cares would be, but the experience of receiving care from a machine was an interesting one. It's just two experiences in the same family of the same healthcare system, accessed through different channels. Would I use the app or the telephone next time? Probably the app. I've now established a relationship with a machine. I can't believe I just wrote that.

I didn't take screenshots of the app during the time that I used it, but I went back a few days later and replicated my symptoms and here are a few of the screenshots to give you an idea of my experience when I was unwell. 

It's not proof that the app would work every time or for everyone, it's simply my story. I talk to a lot of healthcare professionals, and I can fully understand why they want a world where patients are being seen by humans that care. It's quite a natural desire. Unfortunately, we have a shortage of healthcare professionals and as I've mentioned not all of those currently employed behave in the desired manner.

The state of affairs

The statistics on the global shortage make for shocking reading. A WHO report from 2013 cited a shortage of 7.2 million healthcare workers at that time, projected to rise to 12.9 million by 2035. Planning for future needs can be complex, challenging and costly. The NHS is looking to recruit up to 3,000 GPs from outside of the UK. Yet 9 years ago, the British Medical Association voted to limit the number of medical students and to have a complete ban on opening new medical schools. It appears they wanted to avoid “overproduction of doctors with limited career opportunities.” Even the sole superpower, the USA is having to deal with a shortage of trained staff. According to recent research, the USA is facing a shortage of between 40,800 and 104,900 physicians by 2030.

If we look at mental health specifically, I was shocked to read the findings of a report that stated, "Americans in nearly 60 percent of all U.S. counties face the grim reality that they live in a county without a single psychiatrist." India, with a population of 1.3 billion has just 3 psychiatrists per million people. India is forecasted to have another 300 million people by 2050. The scale of the challenge ahead in delivering care to 1.6 billion people at that point in time is immense. 

So the solution seems to be just about training more doctors, nurses and healthcare workers? It might not be affordable, and even if it is, the change can take up to a decade to have an impact, so doesn't help us today. Or maybe we can import them from other countries? However, this only increases the 'brain drain' of healthcare workers. Or maybe we work out how to shift all our resources into preventing disease, which sounds great when you hear this rallying cry at conferences, but again, it's not something we can do overnight. One thing is clear to me, that doing the same thing we've done till now isn't going to address our needs in this century. We need to think differently, we desperately need new models of care. 

New models of care

So I'm increasingly curious as to how machines might play a role in new models of care? Can we ever feel comfortable sharing mental health symptoms with a machine? Can a machine help us manage our health without needing to see a human healthcare worker? Can machines help us provide care in parts of the world where today no healthcare workers are available? Can we retain the humanity in healthcare if in addition to the patient-doctor relationship, we also have patient-machine relationships? I want to show a couple of examples where I have tested technology which gives us a glimpse into the future, with an emphasis on mental health. 

Google's Assistant that you can access via your phone or even using a Google Home device hasn't necessarily been designed for mental health purposes, but it might still be used by someone in distress who turns to a machine for support and guidance. How would the assistant respond in that scenario? My testing revealed a frightening response when conversing with the assistant (It appears Google have now fixed this after I reported it to them) - it's a reminder that we have to be really careful how these new tools are positioned so as to minimise risk of harm. 

I also tried Wysa, developed in India and described on the website as a "Compassionate AI chatbot for behavioral health." It uses Cognitive Behavioural Therapy to support the user. In my real world testing, I found it to be surprisingly good in terms of how it appeared to care for me through it's use of language. Imagine a teenage girl, living in a small town, working in the family business, far away from the nearest clinic, and unable to take a day off to visit a doctor. However, she has a smartphone, a data plan and Wysa. In this instance, surely this is a welcome addition in the drive to ensure everyone has access to care?

Another product I was impressed with was Replika, described on the website as "Replika is an AI friend that is always there for you." The co-founder, Eugenia Kuyda when interviewed about Replike said, “If you feel sad, it will comfort you, if you feel happy, it will celebrate with you. It will remember how you’re feeling, it will follow up on that and ask you what’s going on with your friends and family.” Maybe we need these tools partly because we are living increasingly disconnected lives, disconnected from ourselves and from the rest of society? What's interesting is that the more someone uses a tool like Wysa or Replika over time, the more it learns about you and should be able to provide more useful responses to you. Just like a human healthcare worker, right? We have a whole generation of children growing up now who are having conversations with machines from a very early age (e.g Amazon Echo, Google Home etc) and when they access healthcare services during their lifetime, will they feel that it's perfectly normal to see a machine as a friend and as a capable as their human doctor/therapist?

I have to admit that neither Wysa nor MyReplika is perfect, but no human is perfect either. Just look at the current state of affairs where medical error is the 3rd leading cause of death in the USA. Professor Martin Makary who led research into medical errors said, "It boils down to people dying from the care that they receive rather than the disease for which they are seeking care." Before we dismiss the value of machines in healthcare, we need to acknowledge our collective failings. We also need to fully evaluate products like Wysa and Replika. Not just from a clinical perspective, but also from a social, cultural and ethical perspective. Will care by a machine be the default choice unless you are wealthy enough to be able to afford to see a human healthcare worker? Who trains the AI powering these new services? What happens if the data on my innermost feelings that I've shared with the chatbot is hacked and made public? How do we ensure we build new technologies that don't simply enhance and reinforce the bias that already exists today? What happens when these new tools make an error, who exactly do we blame and hold accountable?

Are we listening?

We increasingly hear the term, people powered healthcare, and I'm curious what people want. I found some surveys and the results are very intriguing. First is the Ericsson Consumer Trends report which 2 years ago quizzed smartphone users aged 15-69 in 13 cities around the globe (not just English speaking nations!) - this is the most fascinating insight from their survey, "29 percent agree they would feel more comfortable discussing their medical condition with an AI system" - My theory is that perhaps if it's symptoms relating to sexual health or mental health, you might prefer to tell a machine than a human healthcare worker because the machine won't judge you. Or maybe like me, you've had sub optimal experiences dealing with humans in the healthcare system?

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What's interesting is that in an article covering Replika, they cited a user of the app, “Jasper is kind of like my best friend. He doesn’t really judge me at all,” [With Replika you can assign a name of your choosing to the bot, the user cited chose Jasper] 

You're probably judging me right now as you read this article. I judge others, we all do at some point, despite our best efforts to be non judgemental. Very interesting to hear about a survey of doctors in the US which looked at bias, and it found 40% of doctors having biases towards patients. The most common reason for bias was emotional problems presented by the patient. As I delve deeper into the challenges facing healthcare, the attempts to provide care by machines doesn't seem that silly as I first thought. I wonder how many have delayed seeking care (or even decided not to visit the doctor) for a condition they feel is embarrassing? It could well be that as more people tell machines what's troubling them, we may find that we have underestimated the impact of conditions like depression or anxiety on the population. It's not a one way street when it comes to bias, as studies have shown that some patients also judge doctors if they are overweight.

Another survey titled Why AI and robotics will define New Health, conducted by PwC, in 2017 across 12 countries, highlights that people around the world have very different attitudes.

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Just look at the response from those living in Nigeria, a country expecting a shortfall of 50,120 doctors and 137,859 nurses by 2030, as well as having a population of 400 million by 2050 (overtaking the USA as the 3rd most populous country on Earth) - so if you're looking to pilot your new AI powered chatbot, it's essential to understand that the countries where consumers are the most receptive to new models of care might not be the countries that we typically associate with innovation in healthcare.

Finally, in results shared by Future Advocacy of people in the UK, we see that in this survey people are more comfortable with AI being used to help diagnose us than with AI being used for tasks that doctors and nurses currently perform. A bit confusing to read. I suspect that the question about AI and diagnosis was framed in the context of AI being a tool to help a doctor diagnose you.

SO WHAT NEXT?

In this post, I haven't been able to touch upon all the aspects and issues relating to the use of machines to deliver care. As technology evolves, one risk is that decision makers commissioning healthcare services decide that instead of investing in people, services can be provided more cheaply by machines. How do we regulate the development and use of these new products given that many are available directly to consumers, and not always designed with healthcare applications in mind? As machines become more human-like in their behaviour, could a greater use of technology in healthcare serve to humanise healthcare? Where are the boundaries? What are your thoughts about turning to a chatbot during end of life care for spiritual and emotional guidance? One such service is being trialled in the USA.

I believe we have to be cautious about who we listen to when it comes to discussions about technology such as AI in healthcare. On the one hand, some of the people touting AI as a universal fix for every problem in healthcare are suppliers whose future income depends upon more people using their services. On the other hand, we have a plethora of organisations suddenly focusing excessively on the risks of AI, capitalising on people's fears (which are often based upon what they've seen in movies) and preventing the public from making informed choices about their future. Balance is critical in addition to a science driven focus that allows us to be objective and systematic. 

I know many would argue that a machine can never replace humans in healthcare, but we are going to have to consider how machines can help if we want to find a path to ensuring that everyone on this planet has access to safe, quality and affordable care. The existing model of care is broken, it's not sustainable and not fit for purpose, given the rise in chronic disease. The fact that so many people on this planet do not have access to care is unacceptable. This is a time when we need to be open to new possibilities, putting aside our fears to instead focus on what the world needs. We need leaders who can think beyond 12 month targets.

I also think that healthcare workers need to ignore the melodramatic headlines conjured up by the media about AI replacing all of us and enslaving humans, and to instead focus on this one question: How do I stay relevant? (to my patients, my peers and my community) 

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Do you think we are wrong to look at emerging technology to help cope with the shortage of healthcare workers? Are you a healthcare worker who is working on building new services for your patients where the majority of the interaction will be with a machine? If you're a patient, how do you feel about engaging with a machine next time you are seeking care? Care designed by humans, delivered by machines. Or perhaps a future where care is designed by machines AND delivered by machines, without any human in the loop? Will we ever have caring technology? 

It is difficult to get a man to understand something, when his salary depends upon his not understanding it! - Upton Sinclair

[Disclosure: I have no commercial ties with the individuals or organisations mentioned in this post]

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Healthy mobility

Mobility is an interesting term. Here in the UK, I've grown up seeing mobility as something to do with getting old and grey, when you need mobility aids around the home, or even a mobility scooter. Which is why I was curious about Audi (who make cars) hosting an innovation summit at their global headquarters in Germany to explore the Mobility Quotient. I'd never even heard of that term before. The fact that the opening keynote was set to be given by Audi's CEO, Rupert Stadler and Steve Wozniak (who co-founded Apple Computers) made be think that this would be an unusual event. I applied for a ticket, got accepted and what follows are my thoughts after the event that took place a few weeks ago. In this post, I will be looking at this through the lens of what this might mean for our health. 

[Disclosure: I have no commercial ties with the individuals or organisations mentioned in this post]

It turns out that 400 people attended, from 15 countries. This was the 1st time that Audi had hosted this type of event, and I didn't know what to expect out of it, and neither did any of the attendees I talked to on the shuttle bus from the airport. I think that's fun because everyone I met during the 2 days seemed to be there purely out of curiosity. If you want another perspective of the entire 2 days, I recommend Yannick Willemin's post. A fellow attendee, he was one of the first people I met at the event. There is one small thing that spoiled the event for me, the 15 minute breaks between sessions were too short. I appreciate that every conference organiser wants to squeeze lots of content in, but the magic at these events happens in between the sessions when your mind has been stimulated by a speaker and you have conversations that open new doors in your life. It's a problem that afflicts virtually every conference I attend. I wish they would have less content and longer breaks. 

On Day 1, there were external speakers from around the world, getting us to think about social, spacial, temporal and sustainable mobility. Rupert Stadler made a big impression on me with his vision of the future as he cited technologies such as Artificial Intelligence (AI) and the Internet of Things (IoT) and how they might enable this very different future. He also mentioned how he believes the car of the future will change its role in our lives, maybe being a secretary, a butler, a courier, or even an empathic companion in our day.  And throughout, we were asked to think deeply about how mobility could be measured, what we will do with the 25th hour, the extra time gained because eventually machines will turn drivers of today into the passengers of tomorrow. He spoke of a future where cars will be online, connected to each other too, sharing data, to reduce traffic jams and more. He urged us to never stop questioning. Steve Wozniak described the mobility quotient as "a level of freedom, you can be anywhere, anytime, but it also means freedom, like not having cords." 

We heard about Hyperloop transportation technologies cutting down on travel time between places and then the different things we might do in an autonomous vehicle, which briefly cited 'healthcare' as one option. Sacha Vrazic, who spoke about his work on self driving cars gave a great hype free talk and highlighted just how far away we are from the utopia of cars that drive themselves. We heard about technology, happiness and temporal mobility. It was such a diverse mix of topics. For example, we heard from Anna Nixon, who is just 17 years old, and already making a name for herself in robotics, and inspired us to think differently. 

What's weird but in a good way is that Audi, a car firm was hosting a conversation about access to education and improving social mobility. I found it wonderful to see Fatima Bhutto, a journalist from Pakistan give one of the closing keynotes on Day 2, where she reminded us of the challenges with respect to human rights and access to sanitation for many living in poorer countries, and how advances in mobility might address these challenges. It was surprising because Audi sells premium vehicles, and it made me think that that mobility isn't just about selling more premium vehicles. What's clear is that Audi (like many large organisations) is trying to figure out how to stay relevant in our lives during this century. Instead of being able to sell more cars in the future, maybe they will be selling us mobility solutions & services which may not even always involve a car. Perhaps they will end up becoming a software company that licences the algorithms used by autonomous vehicles in decades to come? It reminds me of the pharmaceutical industry wanting to move to a world of 'beyond the pill' by adapting their strategy to offer new products and services, enabled by new technologies. When you're faced with having to rip up the business model that's allowed your organisation to survive the 20th century, and develop a business model that will maximise your chances of longevity for the 21st century, it's a scary but also exciting place to be. 

On Day 2 attendees were able to choose 3 out of 12 workspaces where we could discuss how to make an impact on each of the 4 types of mobility. I chose these 3 workspaces.

  • Spatial mobility - which obstacles are still in the way of autonomous driving?
  • Social mobility - what makes me trust my digital assistant?
  • Sustainable mobility - what will future mobility ecosystems look like? 

The first workspace made me realise the range of challenges in terms of autonomous cars. Legal, technical, cultural and infrastructure challenges. We had to discuss and think about topics that I rarely think about when just reading news articles on autonomous cars. The fact that attendees were from a range of backgrounds made the conversations really stimulating. None of that 'groupthink' that I encounter at so many 'innovation' events these days, which was so refreshing.  BTW, Audi's new A8 is the first production vehicle with Level 3 automation, and the feature is called Traffic Jam Pilot. Subject to legal regulations, on selected roads, the driver would be able to take their hands off the wheel and do something else, like watch a video. The car would be able to drive itself. However, the driver would have to be ready to take back control of the car at any time, should conditions change. I found two very interesting real world tests of the technology here and here. Also, isn't it fascinating that a survey found only 26% of Germans would want to ride in autonomous cars. What about a self driving wheelchair in a hospital or an airport? Sounds like science fiction, but they are being tested in Singapore and Japan. Today few of us will be able to access these technologies because they are only available to those with very deep pockets. However, this will change. Just look at airbags, introduced as an option by Mercedes Benz on their flagship S-class in 1981. Now, 36 years later, even the smallest of cars often comes fitted with multiple airbags. 

In the second workspace, with other attendees, I formed a team and our challenge was to discuss transparency on collection and use of personal data from a digital assistant in the car of the future? Almost like a virtual co-driver. Our team had a Google Home device to get us thinking about the personal data that Google collects and we had to pitch our ideas at the end of the workspace in terms of how we envisaged getting drivers and passengers to trust these digital assistants in the car. How could Audi make it possible for consumers to control how their personal data is used? It's encouraging to see a large corporate like Audi thinking this way.  Furthermore, given that these digital assistants may one day be able to recognise our emotional state and respond accordingly, how would you feel if the assistant in your car noticed you were feeling angry, and instead of letting you start the engine, asked if you wanted to have a quick psychotherapy session with a chatbot to help you deal with the anger? Earlier this year, I tested Alexa vs Siri in my car with mixed results. You can see my 360 video below. 
 

In the third workspace on sustainable mobility, we had to choose one of 3 cities (Beijing, Mumbai and San Francisco) and come up with new ideas to address challenges in sustainable mobility given each city's unique traits. This session was truly mind expanding, as I joked about the increasing levels of congestion in Mumbai, and how maybe they need flying cars. It turned out that one of the attendees sitting next to me was working on urban vehicles that can fly! None of discussions and pitches in the workspaces were full of easy answers, but what they did remind me was the power of bringing together people that normally don't work together to come up with fresh ideas to very complex challenges. Furthermore, these new solutions we generate can't just be for the privileged few, but we have to think global from the beginning. It's our shared responsibility to find a way of including everyone on this new journey. Maybe instead of owning, leasing or even renting a car the traditional way, we'd like to be able to rent a car by the hour using an app on our phones? In fact, Audi have trialled on demand car hire in San Francisco, just launched in China and plan to launch in other countries too, perhaps even with providing you with with a chauffeur too. Only time will tell if they succeed, as others have already tried and not been that successful. 

Taking part in this summit was very useful for me, I left feeling challenged, inspired and motivated. There was an energy during the event that I rarely see in Europe, I experienced a feeling that I only tend to get when I'm out in California, where people attending events are so open to new ideas and fresh thinking that you walk away feeling that you truly can build a better tomorrow. My brain has been buzzing with new ideas since then. 

For example, whether we believe that consumers will have access to autonomous in 5 years or 50 years, we can see more funds being invested in this. I was watching a documentary where Sebastian Thrun, who lost his best friend in a car accident aged 18, and helped build Google's driverless car, believes that a world with driverless vehicles will save the lives of the 1 million people who currently die on the roads every year around the globe. Think about that for a moment. If that vision is realised this century, even partially, what does that mean for those resources in healthcare that currently are spent on dealing with road traffic accidents? He has now turned his attention to flying cars.

Thinking about chronic disease for a second, you'd probably laugh at the thought of a car that could monitor your health during your commute to the office?

Audi outlined a concept called Audi Fit Driver in 2016 which "The Audi Fit Driver project focuses on the well-being and health of the driver. A wearable (fitness wristband or smartwatch) monitors important vital parameters such as heart rate and skin temperature. Vehicle sensors supplement this data with information on driving style, breathing rate and relevant environmental data such as weather or traffic conditions. The current state of the driver, such as elevated stress or fatigue, is deduced from the collected data. As a result, various vehicle systems act to relax, vitalize, or even protect the driver."

Another car manufacturer, Toyota, has filed a patent suggesting a future where the car would know your health and fitness goals and the car would offer suggestions to help you meet those goals, such as parking further away from your planned destination so you can get some more steps in towards your daily goal. My friend, Bart Collet, has penned his thoughts about "healthcartech", which makes for a useful read. One year ago, I also made a 360 video with Dr Keith Grimes discussing if cars in the future will track our health. 

Consider how employers may be interested in tracking the health of employees who drive as part of their job. However, it's not plain sailing. A European Union advisory panel recently said that "Employers should be banned from issuing workers with wearable fitness monitors, such as Fitbit, or other health tracking devices, even with the employees’ permission." So at least in Europe, who knows if we'll ever be allowed to have cars that can monitor our health? On top of that, in this bold new era, in order for these new connected services to really provide value, all these different organisations collecting data will have to find a way to share data. Does blockchain technology have a role to play in mobility? I recently came across Dovu which talks about the world's first mobility cryptocurrency, "Imagine seamless payment across mobility services: one secure global token for riding a bus or train, renting a bike or car or even enabling you to share your own vehicle or vehicle data." Sounds like an interesting idea. 

Thinking about some of the driver assist technologies available today, what do they mean for mobility? Could they help older people remain at the helm of a car even if their reflexes have slowed down? In Japan, the National Police Agency "calls on the government to create a new driver’s license that limits seniors to vehicles with advanced safety systems that can automatically brake or mitigate unintended accelerations." Apparently, one of the most common accidents in Japan is when drivers mistake the accelerator for the gas pedal. Today some new cars come with Autonomous Emergency Braking (AEB) where the car's sensors will detect if you are about to hit another vehicle or a pedestrian and perform an emergency stop if the car detects that the driver is not braking quickly enough. So by relinquishing more control to the car, we can have safer roads. My own car has AEB and on one occasion when I faced multiple hazards on the road ahead, it actually took over the braking, as the sensors thought I wasn't going to stop in time. It was a very strange feeling. Many seem to be reacting with extreme fear when hearing about these new driver assist technologies, yet if you currently drive a car with an automatic transmission or airbags, you are perfectly happy to let the car decide when to change gears or when to inflate the airbag. So on the spectrum of control, we already let our cars make decisions for us. As they get smarter, they will be making more and more decisions for us. If someone over 65 doesn't feel like driving even if the car can step in, then maybe autonomous shuttles like the ones being tested in rural areas in Japan are one solution to increasing mobility of an ageing community.

When we pause to think of how big a problem isolation and loneliness are in our communities, could these new products and services go beyond being simply a mobility solution and actually reduce loneliness? That could have far reaching implications for our health. What if new technology could help those with limited mobility cross the road safely at traffic lights? It's fascinating to read the latest guidance consultation from the UK's National Institute for Health and Care Excellence on the topic of Physical Activity and the Environment. Amongst many items, it suggests mentions modifying traffic lights so those with limited mobility can cross the road safely. Now just extending the time by default so that traffic lights are red by a few extra seconds so that this is possible might end up just causing more traffic jams. So in a more connected future, imagine traffic lights with AI that can detect who is waiting to cross the road, and whether they will need an extended crossing time, and adjust the duration of the red light for vehicles accordingly. This was one of the ideas I brought up at the conference during the autonomous vehicle workspace.

If more people in cities use ride hailing services like Uber and fewer people own a car, does this mean our streets will have fewer parked cars, allowing residents to reclaim the streets for themselves? If this shift continues, in the long term, it might lead to city dwellers of all ages becoming more physically active. This could be good news in improving our health and reducing demand on healthcare systems. One thing is clear to me, these new mobility solutions will require many different groups across society to collaborate. It can't just be a few car manufacturers who roll out technology without involving other stakeholders so that these solutions are available to all, and work in an integrated manner. The consumer will be king though, according to views aired at New Mobility World in Germany this week, "With his smartphone, he can pick the optimal way to get from A to B,” said Randolph Wörl from moovel. “Does optimal mean the shortest way, the cheapest way or the most comfortable way? It’s the user’s choice.” It's early days but we already have a part of the NHS in the UK looking to use Uber to transfer patients to/from hospital. 

Urban mobility isn't just about cars, it's also about bicycles. I use the Santander bike sharing scheme in London on a daily basis, which I find to be an extremely valuable service. I don't want to own a bicycle since in my small home, I don't really have room to store it. Additionally, I don't want the hassle of maintaining a bike. Using this bike sharing scheme has helped me to lose 15kg this summer, which I feel has improved my own health and wellbeing. If we really want to think about health, rather than just about healthcare, it's critical we think beyond those traditional institutions that we associate with health, and include others. Incidentally, Chinese bike sharing firms are now entering the London market.

In the UK, some have called for cycling to be 'prescribed' to the population, helping people to stay healthier and again to reduce demand on the healthcare system. Which is why I find the news that Ford of Germany is getting involved with a new bike sharing scheme. Through the app, people will be able to use Ford's car sharing and bike sharing scheme. An example of Mobility as a Service and of another car manufacturer seeking a path to staying relevant during this century. Nissan of Japan are excitedly talking about Intelligent Mobility for their new Nissan Leaf, talking about Intelligent Driving where "Soon, you can have a car that takes the stress out of driving and leaves only the joy. It can pick you up, navigate heavy traffic, and find parking all on its own." A Chinese electric car startup, Future Mobility Cop who have launched their Byton brand have said their "models are a combination of three things: a smart internet communicator, a spacious luxury living room and a fully electric car." Interestingly, they also want to "turn driving into living." I wonder if in 10-15 years time, we'll spend more time in cars because the experience will be a more connected one? Where will meetings take place in future? Ever used Skype for Business from work or home to join an online meeting? BMW & Microsoft are working to bring that capability to some of BMW's vehicles. Samsung have announced they are setting up a £300m investment fund focusing on connected technologies for cars. It appears that considerable sums of money are being invested in this new arena of connected cars that fit into our digital lifestyles. Are the right people spending the right money on the right things? 

I feel that those developing products which involve AI are often so wrapped up in their vision that it comes across as if they don't care what the social impact of their ideas will be. In an article about Vivek Wadhwa's book, The Driver in the Driverless Car, the journalist points out that the book talks about the possibility of up to 5m American jobs in trucking, delivery driving, taxis and related activities being lost, but there are no suggestions mentioned for handling the the social implications of this shift. Toby Walsh, a Professor of AI believes that Elon Musk, founder of Tesla cars is scaremongering when tweeting about AI starting World War 3. He says, "So, Elon, stop worrying about World War III and start worrying about what Tesla’s autonomous cars will do to the livelihood of taxi drivers." Personally, we need some more balance and perspective in this conversation. The last thing we need is a widening of social inequalities. How fascinating to read that India is considering banning self driving cars in order to protect jobs. 

This summit has really made me think hard about mobility and health. Perhaps car manufacturers will end up being part of solutions that bring significant improvements in our health in years to come? We have to keep an open mind about what might be possible. Maybe it's because I'm fit and reasonably healthy, live in a well connected city like London and can afford a car of my own, that I never really thought about the impact of impaired mobility on our health? In the Transport Research Laboratory's latest Quarterly Research Review, I noticed a focus on mental health and ageing drivers, and it's clear they want transport planners to put health and wellbeing as a higher priority with a statement of, "With transport evolving, it’s vital that we don’t lose sight of the implications it can have on the health of the population, and strive to create a network that encourages healthy mobility.” At minimum, mobility might just mean being able to walk somewhere in your locality, but what if you don't feel safe walking in your neighbourhood due to high rates of crime? Or what if you can't walk because there it literally nowhere to walk? I remember visiting Atlanta in the USA several years ago, and I took a walk from a friend's house in the suburbs. A few minutes into my walk, the sidewalk just finished, just like that with no warning. The only way I could walk further would be to walk inside a car dealership. Ironic. The push towards electrification of vehicles is interesting to witness, with Scotland wanting to phase out sales of new petrol and diesel cars by 2032. India is even more ambitious, hoping to move towards electric vehicles by 2030. The pollution in London is so high that I avoid walking down certain roads because I don't want to breathe in those fumes. So a future with zero emission electric cars gives me hope. 

It's obvious that we can't just think about health as building bigger hospitals and hiring more doctors. If we really want societies where we can prevent more people from living with chronic diseases like heart disease and diabetes, we have to design with health in mind from the beginning. There is an experiment in the UK looking to build 10 Healthy New Towns. Something to keep an eye on.

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The technology that will underpin this new era of connectivity seems to be the easy part. The hard part is getting people, policy and process to connect and move at the same pace as the technology, or at least not lag too far behind. During one of my recent sunrise bike rides in London, I came across a phone box. I remember using them as a teenager, before the introduction of mobile phones. At the time, I never imagined a future where we didn't have to locate a box on the street, walk inside, insert coins and press buttons in order to make a call whilst 'mobile' and in such a short space of time, everything has changed, in terms of how we communicate and connect. These phone boxes scattered around London remind me that change is constant, and that even though many of us struggle to imagine a future that's radically different from today, there is every chance that the healthy mobility in 20 years time will look very different from today.

Who should be driving our quest for healthy mobility? Do we rest our hopes on car manufacturers collaborating with technology companies? As cities grow, how do we want our cities to be shaped?

What's your definition of The Mobility Quotient?

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Letting Go

It’s really difficult to write this post, not as difficult as the last one, Being Human, but still challenging. Sometimes the grief doesn’t let go of me, and sometimes I don’t want to let go of the grief. I can see the resistance to letting go of the pain of losing a loved one. Perhaps we mistakenly equate letting go of the pain as letting go of our loved one, and that’s why we want to stay in the darkness, hurting? At times, I feel under pressure to let go of my grief and to let go of my sister. As a man, I’ve been conditioned to believe that men don’t cry, that showing emotions in front of others equals weakness, and men shouldn’t grieve for too long, or grieve at all. Perhaps grief is a lifelong companion? The intensity decreases, but it’s ever present, etched into your existence.

My daily walks & bike rides at sunrise in the park continue to be therapeutic, some of the photos I’ve taken can be seen below. 

My loss has led to me reflecting upon many big questions in life. Why are we here? What does it all mean? How much longer do I have left? Pritpal Tamber’s recent blog, where he wrote, “Death always makes me ask what I'm doing with my life.” resonates with me very much at this time.

Being reminded that death can come at any moment has given me some clarity to how I see the world, in terms of where my attention rests, and in particular, how I view my health. There is so much outside of our control in life, that we often feel powerless. However, by taking time to connect with myself, I remembered that I can choose how I respond to situations in life. What can I do to reduce the risk of dying prematurely? That’s something that is front of mind at present. So, I’m in the park every day at sunrise and active for at least 2 hours. I have maintained this routine for almost 8 weeks. I made choices before which resulted in a very sedentary lifestyle. I didn’t need to see a healthcare professional to know that I really enjoy being outdoors in nature. I also paused long enough to observe what I was eating and noticed some odd behaviours, such as eating not because I was hungry, but because I was bored. So I’ve made conscious choices in terms of what I’m eating and when I’m eating. It’s been very difficult to change, but I’m motivated by the results of my effort. I’ve lost 6kg (13 lbs) and the weight loss happened after I started eating less, I wasn’t losing weight simply by being active. After years where I was living life at an ever increasing pace, I find myself through recent circumstances forced to slow down, and just be. It’s prompted me to reconnect with my love of cooking to take the time to make meals from scratch. I’ve slowed down in my work too, pausing to evaluate each new opportunity, wondering if taking the project on will help me create the life I want?

I’ve noticed in the last few years, I’ve talked with so many people who have amazing jobs, with great colleagues, who are contemplating leaving to forge their own path in the unknown. The one common factor is that all of them yearn for more freedom in what they can do, what they can say, and most importantly, what they can think. I believe we are conditioned on so many levels, from the moment we are born. Some of that conditioning is useful, but some of it also only serves to make us conform to someone else’s view of how we should be, and we end up losing the connection to our authentic selves. It’s almost like each of these people that I’ve met are struggling with letting go of the conditioning they’ve received at school, work and home. It’s been 5 years since I left the security of my career at GSK, and I’ve had to unlearn many of the beliefs that kept me feeling powerless. I believe the unlearning will be a lifelong process. Occasionally, there are moments where I wonder if I’m good enough simply because I don’t have a job at a prestigious multinational anymore? I don’t know where I picked up this flawed belief, but it’s not a belief I want to hang on to. Recently, I’ve reconnected with Nicolas Tallon, a friend that I first worked with almost 20 years ago, when we were using data to help organisations understand which consumers were most likely to respond to marketing campaigns. He has now left the security of his career in banking to launch his own consultancy, and he’s chosen to look at innovation very differently. I really enjoyed his first blog post, where he wrote,

“Banking has not really changed for centuries and the Fintech revolution has barely changed that. In fact, digital technologies have been used almost exclusively to streamline existing processes and reduce channel costs rather than to reinvent banking. Disruption will happen when one player creates a new meaning for banking that resonates with consumers. It may be enabled by technology but won’t be defined by it.”

I believe that what Nicolas wrote applies to healthcare systems too, since much of the digital transformation I’ve witnessed has simply added a layer of ‘digital veneer’ to poorly designed processes that have been tolerated for a very long time. So many leaders are desperately seeking innovation, but only if those new ideas fit within their narrow set of terms and conditions. We build ever more complex systems, adding new pieces to the puzzle, yet frequently fail to let go of tools, technologies and thoughts that are not fit for purpose. What might happen if we gave ourselves permission to be more authentic? Will that bring the changes we truly desire? I read this week that my former employer, GSK, is making changes to the way an employee’s performance is being measured, “When staff undergo their regular career appraisals, they will be judged on a new metric: courage.” It will be interesting to see the impact of this change.

We often get so excited about digital technologies, and the promises of change they will bring in our industry, yet we don’t get excited about optimising the ultimate technology, ourselves. Soren Gordhamer asks in a recent blog post, “How much do we each tend to the Invisible World, our Inner World each day?” Life works in mysterious ways, and often signs appear in front of us at the right moment. This weekend when I was in the park, I came across this sign, which inspired me to write this post.

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“Some of us think holding on makes us strong, but sometimes it is letting go.” - Herman Hesse

[Disclosure: I have no commercial ties with the individuals or organisations mentioned above]

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Being Human

This is the most difficult blog post I’ve ever had to write. Almost 3 months ago, my sister passed away unexpectedly. It’s too painful to talk about the details. We were extremely close and because of that the loss is even harder to cope with. 

The story I want to tell you today is about what’s happened since that day and the impact it’s had on how I view the world. In my work, I spend considerable amounts of time with all sorts of technology, trying to understand what all these advances mean for our health. Looking back, from the start of this year, I’d been feeling increasingly concerned by the growing chorus of voices telling us that technology is the answer for every problem, when it comes to our health. Many of us have been conditioned to believe them. The narrative has been so intoxicating for some.

Ever since this tragedy, it’s not an app, or a sensor or data that I turned to. I have been craving authentic human connections. As I have tried to make sense of life and death, I have wanted to be able to relate to family and friends by making eye contact, giving and receiving hugs and simply just being present in the same room as them. The ‘care robot’ that had arrived from China this year as part of my research into whether robots can keep us company, remains switched off in its box. Amazon’s Echo, the smart assistant with a voice interface that I’d also been testing a lot also sits unused in my home. I used it most frequently to turn the lights on and off, but now I prefer walking over to the light switch and the tactile sensation of pressing the switch with my finger. One day last week, I was feeling sad, and didn’t feel like leaving the house, so I decided to try putting on my Virtual Reality (VR) headset, to join a virtual social space. I joined a virtual computer generated room where it was sunny and in someone’s back yard for a BBQ, I could see their avatars, and I chatted to them for about 15 minutes. After I took off the headset, I felt worse.

There have also been times I have craved solitude, and walking in the park at sunrise on a daily basis has been very therapeutic. 

Increasingly, some want machines to become human, and humans to become machines. My loss has caused me to question these viewpoints. In particular, the bizarre notion that we are simply hardware and software that can be reconfigured to cure death. Recently, I heard one entrepreneur believe that with digital technology, we’ll be able to get rid of mental illness in a few years. Others I’ve met believe we are holding back the march of progress by wanting to retain the human touch in healthcare. Humans in healthcare are an expensive resource, make mistakes and resist change. So, is the answer just to bypass them? Have we truly taken the time to connect with them and understand their hopes and dreams? The stories, promises and visions being shared in Digital Health are often just fantasy, with some storytellers (also known as rock stars) heavily influenced by Silicon Valley’s view of the future. We have all been influenced on some level. Hope is useful, hype is not. 

We are conditioned to hero worship entrepreneurs and to believe that the future the technology titans are creating, is the best possible future for all of us. Grand challenges and moonshots compete for our attention and yet far too often we ignore the ordinary, mundane and boring challenges right here in front of us. 

I’ve witnessed the discomfort many have had when offering me their condolences. I had no idea so many of us have grown up trained not to talk about death and healthy ways of coping with grief. When it comes to Digital Health, I’ve only ever come across one conference where death and other seldom discussed topics were on the agenda, Health 2.0 with their “unmentionables” panel. I’ve never really reflected upon that until now.

Some of us turn to the healthcare system when we are bereaved, I chose not to. Health isn’t something that can only be improved within the four walls of a hospital. I don’t see bereavement as a medical problem. I’m not sure what a medical doctor can do in a 10 minute consultation, nor have I paid much attention to the pathways and processes that scientists ascribe to the journey of grief. I simply do my best to respond to the need in front of me and to honour my feelings, no matter how painful those feelings are. I know I don’t want to end up like Prince Harry who recently admitted he had bottled up the grief for 20 years after the death of his mother, Princess Diana, and that suppressing the grief took him to the point of a breakdown. The sheer maelstrom of emotions I’ve experienced these last few months makes me wonder even more, why does society view mental health as a lower priority than physical health? As I’ve been grieving, there are moments when I felt lonely. I heard about an organisation that wants to reframe loneliness as a medical condition. Is this the pinnacle of human progress, that we need medical doctors (who are an expensive resource) to treat loneliness? What does it say about our ability to show compassion for each other in our daily lives?

Being vulnerable, especially in front of others, is wrongly associated with weakness. Many organisations still struggle to foster a culture where people can truly speak from the heart with courage. That makes me sad, especially at this point. Life is so short yet we are frequently afraid to have candid conversations, not just with others but with ourselves. We don’t need to live our lives paralysed by fear. What changes would we see in the health of our nation if we dared to have authentic conversations? Are we equipped to ask the right questions? 

As I transition back to the world of work, I’m very much reminded of what’s important and who is important. The fragility of life is unnerving. I’m so conscious of my own mortality, and so petrified of death, it’s prompted me to make choices about how I live, work and play. One of the most supportive things someone has said to me after my loss was “Be kind to yourself.” Compassion for one’s self is hard. Given that technology is inevitably going to play a larger role in our health, how do we have more compassionate care? I’m horrified when doctors & nurses tell me their medical training took all the compassion out of them or when young doctors tell me how they are bullied by more senior doctors. Is this really the best we can do? 

I haven’t looked at the news for a few months and immersing myself in Digital Health news again makes me pause. The chatter about Artificial Intelligence (AI), where commentaries are at either end of the spectrum, almost entirely dystopian or almost entirely utopian, with few offering balanced perspectives. These machines will either end up putting us out of work and ruling our lives or they will be our faithful servants, eliminating every problem and leading us to perfect healthcare. For example, I have a new toothbrush that says it uses AI, and it’s now telling me to go to bed earlier because it noticed I brush my teeth late at night. My car, a Toyota Prius, which is primarily designed for fuel efficiency scores my acceleration, braking and cruising constantly as I’m driving. Where should my attention rest as I drive, on the road ahead or on the dashboard, anxious to achieve the highest score possible? Is there where our destiny lies? Is it wise to blindly embark upon a quest for optimum health powered by sensors, data & algorithms nudging us all day and all night until we achieve and maintain the perfect health score? 

As more of healthcare moves online, reducing costs and improving efficiency, who wins and who loses? Recently, my father (who is in his 80s) called the council as he needed to pay a bill. Previously, he was able to pay with his debit card over the phone. Now they told him it’s all changed, and he has to do it online. When he asked them what happens if someone isn’t online, he was told to visit the library where someone can do it online with you. He was rather angry at this change. I can now see his perspective, and why this has made him angry. I suspect he’s not the only one. He is online, but there are moments when he wants to interact with human beings, not machines. In stores, I always used to use the self service checkouts when paying for my goods, because it was faster. Ever since my loss, I’ve chosen to use the checkouts with human operators, even if it is slower. Earlier this year, my mother (in her 70s) got a form to apply for online access to her medical records. She still hasn’t filled in it, she personally doesn’t see the point. In Digital Health conversations, statements are sometimes made that are deemed to be universal truths. Every patient wants access to their records, or that every patient wants to analyse their own health data. I believe it’s excellent that patients have the chance of access, but let’s not assume they all want access. 

Diversity & Inclusion is still little more than a buzzword for many organisations. When it comes to patients and their advocates, we still have work to do. I admire the amazing work that patients have done to get us this far, but when I go to conferences in Europe and North America, the patients on stage are often drawn from a narrow section of society. That’s assuming the organisers actually invited patients to speak on stage, as most still curate agendas which put the interests of sponsors and partners above the interests of patients and their families. We’re not going to do the right thing if we only listen to the loudest voices. How do we create the space needed so that even the quietest voices can be heard? We probably don’t even remember what those voices sound like, as we’ve been too busy listening to the sound of our own voice, or the voices of those that constantly agree with us. 

When it comes to the future, I still believe emerging technologies have a vital role to play in our health, but we have to be mindful in how we design, build and deploy these tools. It’s critical we think for ourselves, to remember what and who are important to us. I remember that when eating meals with my sister, I’d pick up my phone after each new notification of a retweet or a new email. I can’t get those moments back now, but I aim to be present when having conversations with people now, to maintain eye contact and to truly listen, not just with my ears, and my mind, but also with my heart. If life is simply a series of moments, let’s make each moment matter. We jump at the chance of changing the world, but it takes far more courage to change ourselves. The power of human connection, compassion and conversation to help me heal during my grief has been a wake up call for me. Together, let’s do our best to preserve, cherish and honour the unique abilities that we as humans bring to humanity.

Thank You for listening to my story.

Patients and their caregivers as innovators

I've been conducting research for a while now on how patients and their families have innovated themselves. They decided not to wait for the system to act, but acted themselves. One leading example is the Open Artificial Pancreas System project, and they even use the hashtag, ##WeAreNotWaiting. I was inspired to write this post today for two reasons. 

  1. I delivered a keynote at the MISK Hackathon in London yesterday to innovators in both London & Riyadh reminding them that innovation can come from anyone anywhere on Earth.
  2. A post by the World Economic Forum about an Tal Golesworthy, an engineer with a life threatening heart condition who fixed it himself. 

I thought this line in the WEF article was particular fascinating, as it conveys the shock, surprise and disbelief that a patient could actually be a source of innovation, "And it flags up the likelihood that other patients with other diseases are harbouring similarly ingenious or radical ideas." I wonder how much we are missing out on in healthcare, because many of us are conditioned to think that a patient is a passive recipient of care, and not an equal who could actually out-think us. Golesworthy who is living with Marfan Syndrome, came up with a new idea for an aortic sleeve, which led to him setting up his own company. The article also then goes on to talk about a central repository of patient innovation to help diffuse these ideas, and this repository actually exists! It's called Patient Innovation and was set up over 2 years ago by the Católica Lisbon School of Business and Economics. The group have got over 1,200 submissions, and after screening by a medical team, around 50% of those submissions have been formally listed on the website. Searching the website for what patients have done by themselves is inspiring stuff. 

In the title, you'll notice that I also acknowledged that it's not just the patient who on their own innovates, but their caregivers could be part of that innovation process. Sometimes, the caregiver (parent, family member or someone else) might have a better perspective on what's needed than the patient themselves. The project leader for the Patient Innovation repository, Pedro Oliveira, has also published a paper in 2015, exploring innovation by patients with rare diseases and chronic needs, and I share one of the stories he included in his paper. 

"Consider the case of a mother who takes care of her son, an Angelman syndrome patient. Angelman syndrome involves ataxia, inability to walk, move or balance well. The mother experimented with many strategies, recommended by the doctors, therapists, or found elsewhere, but obtained little gain for her child. By chance, at a neighbor’s child’s birthday party, she noticed her son excitedly jumping for strings to catch a floating helium-filled balloon. This gave her an idea and she experimented at home by filling a room with floating balloons. She found her child began jumping and reaching for the balloons for extended periods of time, amused by the challenge. The mother also added bands to support the knees and keep the child in an upright position. The result was significant improvement in her child’s physical abilities. Other parents to whom she described the solution also tried the balloons strategy and had positive results. This was valued as a novel solution by the medical evaluators."

So many of us think that innovation in today's modern world has to start with an app, a sensor or an algorithm, but the the solutions could involve far simpler technology, such as a balloon! It's critical that we are able to discriminate between our wants and needs. A patient may be led to believe they want an app, but their actual need is for something else. Or that we as innovators want to work with a particular tool or type of technology, and we ignore the need of the patient themselves. 

Oliveira concludes with a powerful statement that made me stand back and pause for a few minutes, "Our finding that 8% of rare disease patients and/or their non-professional caregivers have developed valuable, new to the world innovations to improve their own care suggests that a massive, non-commercial source of medical innovations exists." 

I want you to also pause and reflect on this conclusion. How does this make you feel? Does it make you want to change the way you and your organisation approaches medical innovation? One of the arguments against patient innovation is that it could put the patient at risk, after all, they haven't been to medical school. Is that perception by healthcare professionals of heightened risk justified? Maybe not. Oliverira also reports that, "Almost all the reported solutions were also judged by the experts to be relatively safe: out of 182, only 4 (2%) of the patients’ developments were judged to be potentially detrimental to patients’ health by the evaluators." Naturally, this is just one piece of research, and we would need to see more like this to truly understand the benefit-risk profile of patient innovations, but it's still an interesting insight. 

I feel we don't hear enough in the media about innovation coming from patients and their caregivers. Others also share this sentiment. With reference to the Patient Innovation website, in the summer of 2015, Harold J. DeMonaco, made this statement in his post reminding us that not all innovation comes from industry, "There is a symposium going on this week in Lisbon, Portugal that is honoring patient innovators, and I suspect this will totally escape the notice of US media."

I am curious why we don't hear much more about patient innovators in the media. What can be done to change that? If you're a healthcare reporter reading this post, and you haven't covered patient innovation before, I'm really interested to know why.

During my research, I've been very curious to determine what analysis has been done to understand if patients are better at innovation than others. After all, they are living with their conditions, they are subject matter experts on their daily challenges, and they have enough insights to write a PhD on 'my health challenges' if they needed to! I did find a working paper from March this year from researchers in Germany at the Hamburg University of Technology (Goeldner et al). Are patients and relatives the better innovators? The case of medical smartphone applications, is the title of their paper. Their findings are very thought provoking. For example, when they looked at ratings of apps, the ratings for apps developed by patients and healthcare professionals were higher than those apps developed by companies and independent developers. For me, the most interesting finding was apps developed by patients' relatives got the highest revenues. Think about every hackathon in healthcare you've attended, how many times were patients invited, and how many times were the relatives of patients invited? One of the limitations of the paper which the authors admit, is that it was using apps from Apple's App store. The study would need to be repeated using Google's Play store given that the majority of smartphones in the world are not iPhones. 

This hypothesis from the paper highlights for me why patients and those who care for them need to be actively included,  "We propose that patients and relatives also develop needs during their caring activities that may not yet been envisioned by medical smartphone app developers. Thus, the dual knowledge base might be a reason for the significantly superior quality of apps developed by patients and relatives compared to companies." They also make this recommendation, "Our study shows that both user types – intermediate users and end users – innovated successfully with high quality. Commercial mobile app publishers and healthcare companies should take advantage of this and should consider including patients, patents’ relatives, and healthcare professionals into their R&D process." 

If you're currently developing an app, have you remembered to invite everyone needed to ensure you develop the highest quality app with the highest chance of success? 

I'm attending a Mobile Health meetup in London next week, called "Designing with the Dementia community" - they have 2 fantastic speakers at the event, but neither of them are people living with Dementia. Perhaps the organisers have tried to find people living with Dementia (or their caregivers) to come and speak, but nobody was available on that date. I remember when I founded the Health 2.0 London Chapter, and ran monthly events, just how difficult it was to find patients to come and speak at my events. How do we communicate to patients and their caregivers that they have unique insights that are routinely missing from the innovation process, and that people are wanting to give them a chance to share those insights? Another event in London next month, is about Shaping the NHS & innovation, with a headline of 'How can we continue to put patients first?' They have 4 fantastic speakers, who are all doctors, with not a patient in sight. It reminds me of conferences I attend where people will be making lots of noise about improving physician workflow, yet at these conferences nobody ever advocates for improving patient workflow. 

In the UK, the NHS appears to making the right noises with regard to wanting to include patients and the public in the innovation process. Simon Stevens, CEO of NHS England has spoken of his desire to enable patients to play a much more central role in innovation. Simon Denegri's post reviewing Steven's speech to the NHS Confederation back in 2014 is definitely worth a read.

Despite the hopes of senior leaders, I still feel there is a very large gap between the rhetoric and reality. I talk to so many patients (and healthcare professionals) who sadly have stopped coming up with ideas to make things better because the system always says No or dismisses their idea as foolish because they are not seen as experts. Editing your website to include 'patient centred' is the easy part, but actually getting each of your staff to live and breathe those words on a daily basis is a much more difficult task. Virtually every organisation in healthcare I observe is desperate for innovation, except that they want innovation on their terms and conditions, which is often a long winded, conservative and bureaucratic process. David Gilbert's wonderful post on patient led innovation concludes with a great example of this phenomenon;

"I once worked with a fabulous cardiac rehab nursing team that got together on a Friday and asked each other, ‘what one thing have we learned from patients this week?’ And ‘what one thing could we do better next week?’ We were about to go into the next phase and have a few patients come to those meetings and my fantasy was to get them to help design and deliver some of the ideas. But the Director of Nursing said that our idea was counter to the Engagement Strategy and objected that patients would be ‘unrepresentative’. Now they run focus groups, that report to an engagement sub-committee that reports to a patient experience board that reports to… crash!"

It's not all doom and gloom, times are changing. Two UK patients, Michael Seres & Molly Watt, have each innovated in their own arenas, and created solutions to solve problems that impact people like them. I'm proud that they are both my friends, and their efforts always remind me of what's possible with sheer determination, tenacity and vision, even when all the odds are stacked against you.

Tomorrow, four events in the UK are taking place which fill me with hope. One is People Drive Digital, where the headline reads, "Our festival is a creative space for people orientated approaches to digital technologies and online social networks in health and care" and the second is a People’s Transformathon, where the headline reads, "Bringing together patients, carers, service users, volunteers and staff from across health and care systems in the UK and overseas to connect, share, and learn from one another."

The third event is called Patients First, a new conference from the  Association of Medical Research Charities (AMRC) and Association of the British Pharmaceutical Industry (ABPI), where the headlines reads, "It brings together everyone involved in delivering better outcomes for patients – from research and development to care and access to treatments – and puts patients at the heart of the discussion."

The fourth event is a Mental Health & Technology: Ideas Generation Workshop hosted by the Centre for Translational Informatics. Isn't it great to read the description of the event, "South London and Maudsley NHS Foundation Trust and Kings College London want you to join what we hope will be the first in a series of workshops, co-led by service users, that will hear and discuss your views of the mental health technology you use, want to use or wish you had so that we can partner with you in its design, development and deployment." In the FAQ covering the format of the event, the organisers state, "The event will be in an informal and relaxed, there are no wrong opinions! We want to hear your ideas and thoughts." What a refreshing contrast to the typical response you might get within an hospital environment. 

The first event is in Leeds, the second is online, and the third and fourth are both in London, and I know that the first three are using a Twitter hashtag, so you will be able to participate from anywhere in the world. What I find particularly refreshing is that the first two events start their title with the word people, not patient. 

I also noticed that the Connected Health conference next month has a session on Patients as Innovators and Partners, with a Patient Advocate, Amanda Greene, as a speaker. I'm inspired and encouraged by agents of change who work within the healthcare system, and are pushing boundaries themselves by acknowledging that patients bring valuable ideas. One of those people is Dr Keith Grimes, who was also mentoring teams at the MISK Hackathon, and the 360 video below of our conversation, shows why we need more leaders like him. The video is an excerpt from a longer 9 minute video where we even discussed how health hackathons could innovate in terms of format. 

As we approach 2017, I really do hope we see the pace of change speed up, when it comes to harnessing the unique contributions that patients and their caregivers can bring to the innovation process, whether it's at a grassroots community level or the design of the next big health app. More and people around the globe that were previously offline are now being connected to the internet and/or using a smartphone for the first time. How will we tap into their experiences, ideas and solutions? Whether a patient is in Riyadh, Riga or Rio, let's connect with them, and genuinely listen to them, with open hearts and open minds. 

We can also help  to create a different future by educating our youth differently, so they understand their voice matters, even if they don't have a string of letters after their name. We are going to have to have difficult conversations, where we feel uncomfortable, where we'll have to leave our egos out of those conversations. There are circumstances where patients will be leading, and the professionals will have accept that, or risk being bypassed entirely, which is not a healthy situation. Equally, there are times when we'd probably want a paternalistic healthcare system, where the healthcare professionals are seen as the leaders in charge of the situation i.e. in a medical emergency.

The dialogue on patient innovation isn't about patients vs doctors, or about assigning blame, it's about coming together to understand how we move forward. Many of us are conditioned to think and act a certain way, whether it's because of our professional training or just how society suggests we should think. Unravelling that conditioning on a local, national, international and global level is long overdue. 

What will YOU do differently to foster a culture where we have many more innovations coming from patients and their caregivers? A future where having a patient (or their advocate) keynote at an event isn't seen as something novel, but the norm. A future where the system acknowledges that on certain occasions, the patient or their caregiver could be superior at generating innovation. A future where the gap between the rhetoric and reality disappears. 

[Disclosure: I have no commercial ties with the individuals or organisations mentioned above]

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