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.

phonebox2.jpg

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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Robots in health & social care: Terrifying or marvellous?

I appreciate it's a tough time for doctors, facing increased pressure and scrutiny, from both payers and patients. They work so hard and make so many sacrifices along the way in order to practice medicine. Add to the mix that outsiders are developing technologies which may impact the delivery of care. Rock Health estimates that people with doctoral or medical degrees make up fewer than 20 percent of all CEOs of funded digital health companies. How will the established healthcare system react to outsiders who are 'disrupting' existing processes and procedures? Will they protest on the streets in the same manner as the taxi drivers across Europe last week, who are upset about the impact of consumers using the Uber app on their industry?

The perceived threat

The relentless progress of technology can be frightening. When I have spoken before about the possibility that one day doctors could become unemployed due to advancing technology, I've observed a whole range of reactions. When I even discuss the possibility of doctors being replaced by robots powered by artificial intelligence, many take the view that this is a preposterous idea. How dare we imagine a world where human doctors are replaced by machines & algorithms?

Now, if this was such a preposterous idea, with zero chance of every occurring in the future, the system would just ignore it, right?

In the USA, National Nurses United launched a campaign to alert the public to the dangers of hospitals using algorithms and unproven medical technologies. The video [below] they have put together is actually very thought provoking. The fact that they've invested time, effort and money into this campaign suggests to me that do indeed feel threatened by the potential impact of advancing technology. 

Depending upon how you view the future, robot nurses & doctors could be just a few decades away or unlikely to ever happen. Can we state with any certainty which path the development and adoption of robots will take in healthcare? I don't believe so. As AstraZeneca state on their website, "Predicting the future of healthcare is virtually impossible". It's sensible to consider all the possible future scenarios, not just the scenarios we feel comfortable with. 

One of the drivers behind exploring robots in healthcare is to understand if it could reduce medical errors. A hospital in the UK has brought in a robot to combat "serious" human errors in handing out prescriptions. 

Who is pushing the boundaries?

If you want to get a glimpse into the future of robots in healthcare, take a look at Japan. A country with the highest proportion of citizens aged over 65 on the planet. They are also leaders in robotic technology. For the Japanese government, their focus will be on the use of robots in nursing care. In 2020, Japan will host the Olympics, and is possibly going to host 'Robot Olympics' at the same time. Given that Dementia is increasingly challenging for healthcare systems globally, are robots the future of eldercare? Bristol Robotic Laboratory in the UK believe their robot, Molly could be part of that future. The video is truly eye opening. 

Softbank in Japan plan to sell a robot called Pepper, which is claimed to be the first robot that can recognise human emotions and respond to them. 

What does all of this mean?

The recent documentary, Power to the patient, opens with these sentences, "The relationship between doctors and patients is about to change dramatically. Modern technology enables patients to become their own personal healers, with the doctor as advisor".

Now, it may be the case that human doctors & nurses never become unemployed. However, if technology continues to advance at the same pace, what patients want from doctors & nurses may change. Even though the the United States’ National Robotics Initiative (NRI) seeks to integrate robotics to assist rather than replace nurses and physicians, the NRI’s language doesn’t specifically forbid healthcare organizations in the U.S. from seeking to completely replace nurses and doctors. 

What will systems under extreme cost pressure do if one day robots can do much of what doctors & nurses do today? Will the doctors who refuse to work with new technology have fewer opportunities? Will the successful doctors & nurses of the future be the ones that can work with robots & algorithms to deliver the care which serves patients' needs? What would training at medical school look like? How might the relationship between patients, doctors and nurses change? How will the power dynamics change? If there is conflict in decision making, whose verdict will reign supreme? Human or Robot? What if patients get emotionally attached to a robot caring for them at home 24/7? Can robots truly care for us?

Whilst people happily buy modern cars which are assembled by robots, would those same people feel comfortable if some aspects of health & social care were delivered by robots? Do you agree with Peter Diamandis, who envisions a future where patients prefer a robot rather than a human surgeon to perform cardiac surgery? NASA are developing a robot which could one day perform life saving surgeries on astronauts in space. 

Fact from fiction

I attended an event at Nesta in London last week, "Humanising the robot society", which I really enjoyed. In a few weeks, I'm attending an event at Policy Exchange in London, "Rise of the Robots: What skills will we need in the future economy and how do we get them?". What's fascinating is that the second event has David Willetts MP, Minister for Universities and Science as the first speaker. If robots truly aren't going to impact our lives, why would these two high profile organisations waste their time even discussing these possible scenarios? 

We must be mindful that it's easy for scientists to make grand claims about the future of Artificial Intelligence and robots. It's hard for members of the public to distinguish facts from hype. How do we have informed discussion? Perhaps the events in London are the way forward?

Technology, as always, can serve to both improve and undermine the quality of our lives. I believe the development and adoption of robots could have serious ramifications for everyone in society over the next few decades, not just those in health & social care. For some the rise of the robots seems terrifying, for others it seems marvellous. What's your view? 

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

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Wearables: Hope or Hype?

I've been thinking about this question a lot in 2014. I'm seeing more articles proclaiming that wearable technology is a 'fad', has no 'practical' value, and in the context of health are often viewed as inferior to officially certified & regulated medical devices.

"Technology is beyond good or bad", said Tamara Sword, at yesterday's Wearable Horizons event. Now, a very common piece of technology in our kitchen, the knife, is a classic example. Used for it's purpose, it speeds up the food preparation process by slicing carrots. However, it can also be used for harm, if used to slice a finger off.

The same goes with wearable technology like Google Glass. It can do immense good, such as saving someone's life. However, it could also be used to harm, if someone wearing Glass takes a picture of your 5 year old child in Starbucks without obtaining consent from your child or yourself [credit to the visionary John Havens for making me think about the Starbucks scenario]

We all have to start somewhere

We have to remember that the market for wearables is embryonic, it's not mature in any shape or size. Every innovation I see & test is crude & clumsy, with many flaws. Thinking back to 1903, wasn't the first airplane crude & clumsy?  Wearables WILL evolve, just like the the airplane [Hopefully, it won't take 111 years like the airplane] 

I salute those willing to take a risk and develop wearable technology. From the lone entrepreneurs to Nike, what unites them is that they took a risk. They experimented. Experiments don't always turn out to be successful, noting Nike's recent withdrawal from Wearables. That's entirely normal, we can't expect everyone to succeed at their first attempt. What would our world look like today, if Steve Jobs had given up after his first attempt? 

How many of you failed your driving test the first time? Instead of dismissing the brave efforts of those willing to take a risk into the unknown, we should be encouraging & supporting them. It's those willing to take those chances, to explore unknown waters, to imagine a better world, that have helped humanity make so much progress. 

Courageous conversations

There are many questions around wearables that remain unanswered. There are uncomfortable, awkward & terrifying conversations surrounding the use of wearable technology that are sorely needed, not just within society, but within our political, legal and regulatory framework too. If we place a piece of wearable tech on a patient with dementia, how do we obtain informed consent from the patient?

When I saw the recent headline that a hospital in Boston is equipping everyone in the ER room with Google Glass, my first reaction was one of excitement, with my second reaction being one one of curiosity. What happens to the face & voice data? At 3am, when the ambulance rushes you & your sick child to the hospital, will you really stop to ask the hospital staff, what the privacy policy is, regarding the images captured using Google Glass of your child in the hospital?

I observe that many, including those in the business of creating or using regulated medical devices, look down upon some wearable technologies. Activity trackers are frequently viewed as fun toys, not 'proper' medical devices.

Let me ask you something. If an overweight & inactive person aged 40, uses a $99 Fitbit to track their activity & sleep, leading to insights that trigger behaviour change over the long term, is it still a toy? For example, what if developing the habit of walking 10,000 steps a day (versus 1,000 today), reduces their risk of a heart attack, delays the onset of Diabetes or even prevents high blood pressure? Still just a 'glorified' pedometer?

Imagining a better tomorrow

I believe wearable technology, particularly for health, is just one step on the journey in today's digital world. There will continue to be failures, and whilst there is significant froth & hype, there is also significant hope. Our ability to imagine a better future is what has gotten us to where we are today. Imagination could be one of the most useful attributes for any organisation wishing to meet the challenges facing human health in the 21st century.

It appears likely that firms which don't have roots in health could be helping us realise this new world. Perhaps this shift frightens those firms that have got their roots in health? I'm intrigued to note that Samsung, are holding an event in San Francisco later this month, promising that a new conversation about health is about to begin. Having visited South Korea a few years ago, and learning so much about Samsung's history & vision, I'm going to be watching what they do very closely. 

Is it a bad thing if wearable technology (and the resulting data, insights & education) empowers patients and makes them less dependent on doctors & the healthcare system?

Is it wrong to dream of 'smart fabrics' where our health could be monitored 24 hours a day?

Is it silly to want to develop sensors that could one day transmit data directly from our internal organs to our doctors?

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Think twice before sharing your data

Who needs hospitals? We have smartphones, sensors and data!

According to Eric Topol, who is one of the leading voices in Digital Health, the smartphone is going to be the healthcare delivery platform of the future. Awesome right? No need to go into a hospital in the future, the app on your phone can record your blood pressure and transmit it to your doctor via the internet etc. 

Is it just a few rich people in California who believe this? Not according to Intel's latest research (see infographic below on what health information people are willing to share). The survey collected responses from people in Brazil, China, France, India, Indonesia, Italy, Japan and the United States. 84% would share their vital stats like blood pressure and 75% would share information from a special monitor that's been swallowed to track internal organ health. In fact, India is the country most willing to share healthcare information to aid innovation. Super awesome news, right?

Eric Dishman, Intel fellow and general manager of the company's Health and Life Sciences Group, says "Most people appear to embrace a future of healthcare that allows them to get care outside hospital walls, lets them anonymously share their information for better outcomes, and personalizes care all the way down to an individual's specific genetic makeup." 

Also, this week was the mHealth Summit in Washington, DC. It's the largest event of it's kind, over 5,000 people from around the world gathered. I attended last year, but participated this year from London via Twitter. Amazing energy and bold visions of the future on mHealth. 

In fact, this week, I also participated in the world's first G8 Dementia Summit via Twitter. "Big Data" captured from patients around the globe was cited by many of the leaders as one of the ways in which we can work to beat Dementia by 2025. Yes, the G8 put a rather ambitious  goal of a cure (or disease modifying drug) by 2025. Again, we just need to collect all this data from individuals, remove personal information, make it anonymised, and Global Health in the future will be transformed, right?

Easier said than done

Unfortunately, many of the people at conferences who are envisioning a world where we happily share our personal health data altruistically for the benefit of medical research to improve Global Health are unaware of the realities on the ground. "Big Data" seems to be inserted by anyone and everyone into their speeches and tweets. Doctors, politicians, and corporate leaders frequently use the phrase, in the hope that more people will sit up and pay attention to what they are saying.

Let's take anonymisation. If someone tells you that your personal data will be anonymised and then aggregated and made available to 3rd parties, you believe them, when they tell you your data can't identify you. Let's see what the report from the Royal Society in June 2012 said; 

"the security of personal records in databases cannot be guaranteed through anonymisation procedures"

"Computer science has now demonstrated that the security of personal records in databases cannot be guaranteed through anonymisation procedures where identities are actively sought"

It's good to have people like Professor Ross Anderson who dare to question the viability of anonymisation. 

Now, there are tens of thousands of health apps, and generally how many of us take the time to read terms and conditions before downloading any app, let alone a health app? We trust the brand, don't we? How do we determine as consumers and patients, whether a health app is safe to use? 

A company in the US, Happtique is working on a program of certification for health apps. Definitely a worthwhile initiative. So whilst I was monitoring the Twitter stream during the mHealth Summit, I noticed a software developer, Harold Smith, at the event had shared his blog post with his findings that there were security issues with some apps that had passed the certification process at Happtique. Yes, shocking news, but even more shocking is how a lot of people in this industry don't seem to care. Kudos to Happtique, they did react swiftly to this news by suspending their certification program. 

Here in the UK, the NHS have set up a health apps library. Their review process is listed too. Their website says, "All apps submitted to the Health Apps Library are checked to make sure that they are relevant to people living in England; comply with data protection laws and comply with trusted sources of information, such as NHS Choices". I've got no reason to doubt the security of the apps on the NHS library, but I'm curious - what if someone independent like Harold Smith took a look at these apps? What would his findings be? 

2014 & beyond 

In an ideal world, none of us as end users would have to worry about the security & privacy of our personal health data. We all want improved health, and improved healthcare, and we are told that mobile technology, sensors & big data could make the world a much better place. As a Digital Health Futurist, I truly want to believe that. 

However, the road ahead is potentially very dangerous, largely because the froth and hype in Digital Health is overshadowing the need to have an open and candid discussion in society on the risks and benefits of going down this road. Companies such as GE, Intel, & Cisco are pumping billions into the Internet of Things. This week the Allseen Alliance was announced, standards to allow different devices to connect to each other. Again, exciting stuff, right? 

Imagine, your smart toilet connected to your smart fridge connected to your smartphone. Personalised meal suggestions on your phone based upon the combination of the clinical analysis of your urine and what food you have remaining in your fridge? More data about our health, more data about us being transmitted between devices and apps using wifi. Hmmm, how many of us have stopped to reflect upon what safeguards are needed to prevent our bodies from being the target of hackers? 

In principle, I'm not against any company or government collecting more data about us and our health. If collecting more data can help us develop a cure for diseases such as Cancer or Dementia, that would be an amazing achievement for science. 

However, I do want all of us, wherever we live on this planet, to be able to make INFORMED choices about how we share our health data, and who we share it with. Who will drive conversations that lead to a society where we can make informed choices about our health data? How do we get informed consent to participate in data sharing initiatives from those members of society who are vulnerable, such as children or older people with Dementia? Is that even ethical? 

One piece of good news that came out this week is that the Data & Society Research Institute is a new non-profit organisation launching in 2014. Based in New York City, it will be dedicated to addressing social, technical, ethical, legal, and policy issues that are emerging because of data-centric technological development. 

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Data about us may be the key to improving the health of 7 billion people, but that can only happen if our rights are protected at all times. The issues are common to all personal data, not just health data. Perhaps the way forwards is the creation of an international bill of digital rights?

 

[Disclosure: I have no commercial ties with any of the companies mentioned above]

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NHS England Citizens' Assembly - Day 1

I've just attended Day 1 of the Citizens Assembly development day organised and facilitated by NHS England with the Democratic Society, Involve, and Public_i. A fascinating and thought provoking day with lots of very interesting people. A big thanks to the facilitators Catherine Howe, Anthony Zacharzewski and Simon Burall for a smoothly run day. I was extremely impressed by how they managed to keep the event running on time, despite the strong opinions voiced from the audience. Many of the conferences that I pay thousands of pounds to attend could learn a thing or two from these individuals. 

What is the proposed model?

A model of a NHS Citizens' Assembly was to be discussed and developed during these two days. What is the purpose of the NHS Citizens' Assembly you may ask?  

From Tim Kelsey's  blog, these are the 3 intended purposes; 

  1. To give citizens and organisations a direct transparent route for their voices to reach the heart of the NHS England decision making process, in a way that cannot be ignored.

  2. To give the NHS England board and others a new source of evidence and opinion on the NHS now and future.

  3. To give the public an open and robust accountability mechanism for the work of NHS England, and opportunities to participate in every aspect of the organisation’s work.

The paper on the Citizens' Assembly can be found here. [Note: This draft outline is intended to give a common starting point for discussion, critique and positive contribution. It is not intended to be the final word on the structure and working of the NHS England Citizen Assembly, and it is not a statement of Government policy]. 

An overview of the model that was discussed today is posted on the Demographic Society's website. [Note: the wikipedia definition of a Citizens' Assembly is here]

This is definitely an admirable vision to have, and makes me proud to be British, as I don't read much about other countries who are pursuing this type of vision.  

From the Demographic Society's blog, "We are seeing the NHS Citizen as being a complete system which is actively listening to citizens via digital and other channels and then curating and developing the evidence around ideas which emerge until they are in a state to be debated at a formal assembly. The model to do this is built in three layers:

A ‘Discovery’ Layer which is doing the active listening and seeking out ideas.  This layer will also join up related ideas and while digital by default will also be responsible for making sure that the whole system is as representative as possible by actively seeking out the views and ideas of groups who are not coming forward on their own.

A ‘Discussion’ layer which will develop the evidence base around ideas and help to create actionable proposals.  When we talk about evidence in this layer we are seeking to combine different forms of evidence from a range of stakeholders

An ‘Assembly’ layer which will physically meet twice a year in order to look at discussion ideas and make recommendations to the NHS England board" 

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Olivia Butterworth (furthest to the right)

Olivia Butterworth (furthest to the right)

Olivia Butterworth made a remark at the beginning of the day that NHS England wants to get a direct connection to those who use services. 

We spent the morning splitting into groups and discussing each of the 'layers', and in the afternoon, drilled down into topics such culture change, agenda setting & governance. The discussions certainly showed the variety and intensity of opinions that people in each group held. The facilitators listened to what was said and plan to use the output of the discussion to update the draft paper. This is definitely not going to be easy. 

Wait a minute - surely there are existing mechanisms?

However, for me personally, a critical step has been overlooked. An audit of all the different ways that currently exist where citizens' voices can be heard. I'm curious to see the evidence used in reaching the decision to propose a Citizens' Assembly? Show me the data! I'm not convinced of the need for a Citizens' Assembly. There seems to be a myriad of routes where a patient could have their voice heard by decision makers in the NHS, which don't appear to be mapped out in one diagram as yet. I did ask in today's meeting if such a map existed, but it doesn't appear to exist. Now, I learnt so much about the NHS today, and just how complex it has become. For example, Healthwatch England, set up 12 months ago, and according to their website;

is the independent consumer champion for health and social care in England. Working with a network of 152 local Healthwatch, we ensure that the voices of consumers and those who use services reach the ears of the decision makers.

We also have Health & Wellbeing boards, and according to Wikipedia;

The aim of health and wellbeing boards is to improve integrated working between local health care, social care, public health and other public service practitioners so that patients and service users experience more joined-up care, particularly in the transition between health and social care. The boards are also responsible for leading locally on reducing health inequalities.

Additionally, I was reading about patient experience and the 2013/14 Outcomes Framework. The Outcomes Framework states;

1.43 A new placeholder indicator 4c has been included, which will be based on the Friends and Family test. The inclusion of this indicator will enable more ‘real-time’ feedback to be reflected in the framework. The Friends and Family test will ask patients whether they would recommend the hospital where they received their treatment and care, to a family member or friend.

1.44 It will be rolled out nationally starting with adult acute inpatient and A&E services in April 2013. The precise details of this indicator will need to be developed as national roll out takes place.

Are you as confused as I am? Wait there is more!  

NHS Specialised Services engages with patients and welcomes their views and experience of the services we commission. This helps us to check the development and improvement of services. Evaluating the patient experience and the quality of care received often helps the NHS to discover better ways of working. 

Someone in today's meeting talked about PEGs that currently capture patient experiences. PEG stands for Patient Experience Group, and this is an example of a PEG. 

I also noticed that Clinical Commissioning Groups also have their own Patient Experience surveys, such as this example by the Oxfordshire CCG. 

What I've described above is not necessarily a comprehensive audit of existing routes where a patient's voice can reach decision makers, it's just what I found in my research this evening. The question that remains unanswered for me is 'Where is the GAP in existing services and mechanisms for capturing feedback from patients?'.  

Risk of missing patient voices

Another problem that I see with the proposed Citizens' Assembly model is the government's digital by default agenda.  

Looking again at the paper, and picking out a few areas of concern for me, within the 'Discovery' layer.

To be actively (and persistently) listening to public conversations (usually on digital channels) that relate to the sphere of influence of NHS England and to ensure that these are visible across the discover space;  

Online/offline bridges, enabling the content and conversations from the Discovery layer to include and be included in offline events, will need to be developed. 

This is a digital by default approach, underpinned by work to ensure that this approach does not exclude those who are not able to participate online.

Being a data person, I did quote several statistics in today's meeting. 7 million people in the UK have NEVER used the internet. Whilst 99% of those aged 16-24 have used the internet, only 31% of those aged 75 years and over have used the internet. Given that the NHS's biggest challenge is chronic disease management, which age group do YOU think is likely to be a bigger user of NHS England's services? 

It's not just me. The National Audit Office has warned the UK government that it's digital by default agenda could exclude more vulnerable members of society who don't access the internet. Their survey found many of those who have never been online are poor, elderly or disabled.  

Another shocking statistic. Only 20% of care homes in the UK offer internet access to their residents. 

According to Twitter UK, there are 15 million 'active' Twitter users in this country. When I quizzed them on how they define active, this was their response. I wonder how many smartphones are logged into Twitter simply because the device was switched on that day. I'm curious if that instance of logging in is counted as 'active'?

The digital divide is not something that can be just dismissed. In the 21st century, it has to be taken seriously. Whose voices are we at risk of ignoring? Can monitoring of digital services really provide the 'truth' about public opinion? Are we at a point with these digital tools where we can find the 'signal' within the 'noise'? Can we really bridge the gap between 'online' and 'offline' without spending lots of money? 

Don't get me wrong, I love technology, and am passionate about how it can serve all of us in healthcare. However, I'm also conscious that new technologies can often appear so 'sexy' that we forget to ask critical questions, such as, 'Where is the evidence that these data are accurate and representative?'.

Do we need to go back a few steps?

I'm struggling to see the justification for the discussion and development for a proposed Citizens' Assembly at this moment in time, when I do not have clarity on what currently exists, and where the GAPS are. A critical step in the process appears to have been omitted, and it's left me extremely confused. When the meeting finished today, it felt to me as if this discussion was too early. An advert I spotted at a US airport captures that feeling. 

I recognise and appreciate that NHS England and others have put a lot of effort into the process so far, including the workshop in July and organising these development days. There were many people in the room today who have much greater experience and wisdom in the area of the NHS, and perhaps they reached a different conclusion to me. I'd love to hear your perspective after you read this post (even if you were not at the meeting or watching the webcast).

Advert in San Jose Airport, California

Advert in San Jose Airport, California

Social Media: Can it really make a difference?

Yesterday, I was part of a panel at Social Media Week London. Hosted by Mairi Johnson of Healthbox Europe, the title of the panel was Digital Healthcare: Pulse Found

 I was joined by a diverse group of practitioners in the space, Jemima Stewart, Manuela Maiguashca, Tim Anstiss, Jorge Armanet and James Norris. 

Data from social media: Where is the value?

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Given my data background, I made a few comments. Companies have developed 'social listening' platforms, and often the premise is an organisation such as a pharma company can understand what's being said by patients in real-time about their medicine, particularly relating to potential issues with the medicine, such as adverse events. However, when I speak with pharma, they tell me, knowing 'problems' from social media isn't enough, they want the other side of the coin. What benefits are patients experiencing from the medicine? Now, is social media giving you the full picture, or are you hearing more about the risks, and less about the benefits? 

Whilst finding out what patients are saying on social media could potentially be useful, the true value will only be realised when it's linked to the patient's medical history. A marriage of 'hard' and 'soft' data in healthcare. Finding the signal among the noise. 

Trust and Engagement

Part of the discussion was also about engagement and trust. I recall my own example, I had an issue with a rental car a few months ago. I tweeted about the issue to the car rental company. To my surprise, they followed me within minutes on Twitter, and sent me a direct message asking for my phone number. I did that, and spent 30 minutes with a member of their customer service team, who LISTENED to my issue, and did his best to resolve it there and then. It turns out he and his colleagues spend all day monitoring what is said about their rental car company on social media, and they respond accordingly.  

Now, look at healthcare, imagine you're a HIV or mental health patient, and you receive less than optimal care. Would you really post a tweet to the NHS with details of the problem? Online communities where conversations can be shared privately may provide a way of capturing that information, but even then, how can a patient really be sure their personal data is secure? Healthcare providers work hard to protect privacy of both the patient and the healthcare professional, which allows trust to be a cornerstone of the relationship. As more doctors and patients get social media accounts, what are the risks that this hard earned trust can be broken? All it takes is one public tweet to damage someone's reputation. 

I remember the unforunate events with the Boston bombing earlier this year. Concerned citizens took to social media, utilising Twitter and Reddit to try to help the police find the suspects. One night, citizens believed they identified a suspect, a student who had vanished a few weeks back, and shared this on social media. For a brief period of time, the misinformation that spread so rapidly on social media branded this student as one of the bombers. Reddit had to apologise to the family of the student for what happened.  Naturally, I can understand the caution that many in the healthcare profession have towards embracing social media.  

I also just read today about an airline in the UK, which allegedly tried to prevent a passenger boarding their plane, because he publicly tweeted something negative about their customer service. Now, imagine in healthcare, you express your dissatisfaction using social media about your experience in healthcare? Could it potentially impact who wants to treat you?  

Pulse of the patients: A true representation? 

Many will argue that social media allows us to understand the 'pulse' of patients in real-time. Yes, that's true to some extent. However, what about the 7 million people (15%) in the UK that have never used the internet? Many of which are poor, disabled or elderly.  

The biggest users of healthcare, are typically not the 20 somethings running around creating apps in East London or Palo Alto. They are the elderly. The biggest challenge the NHS faces is chronic disease management. Who are living with multiple comorbidities and taking multiple medications every day? Again, older patients. How many of them are online? How many of them can afford an iPhone with a data plan? How many of them WANT to share via social media, given that did not grow up in the digital economy? 

80% of UK care homes have no access to the internet. Does social media capture what the residents of these care homes are saying about their care? Nope. The National Audit Office has warned the UK government that it's fixation with digital by default agenda could leave people behind. Will this trend mean that the 'Digital Divide' becomes a 'Digital Gulf'? 

Evidence

I believe we need to generate evidence of what works and what doesn't work in social media, so we have the chance to make informed choices. I've observed far too many decision makers adopting new technologies simply because it's this year's buzzword. Every organisation, large or small has a finite budget. Maybe in your organisation, the money you would spend on setting up a social media department might be better spent on hiring two extra nurses?

A recent study at UCLA, recruited 112 men from Los Angeles who have sex with other men, and examined if social media and online communities could increase HIV testing and lead to behaviour change. The results seemed to suggest so. However, the two biggest groups in the study population were 60% African-American and 28% Latino. I'm curious. If that study were replicated in rural North Carolina or rural Yorkshire, would the results be the same? 

Looking ahead

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In life, one of the methods for obtaining and retaining power is to not share information with others. Social media promotes sharing, collaboration and transparency. That's bound to make those in healthcare who currently wield power quite nervous. 

Overall, it was a fascinating discussion, with a series of excellent questions. We ran out of time, but the questions being posed by the audience made me feel like we need to have a healthy, sincere and open debate about the role of social media in both healthcare AND social care.  

Are we moving towards a world where one day every doctor, every hospital, every patient will have a social media presence? Will we no longer need people to work in customer service departments, because patient feedback is received and acted on in real-time using social networks? Will the openness and transparency promised by social media prevail over those who would rather keep information locked away in a filing cabinet? 

 

Who Owns Your Health Data?

"Personal Data will be the new 'oil' - a valuable resource for the 21st century. It will emerge as a new asset class touching all aspects of society”. That's taken from the introduction of a report from the World Economic Forum published in January 2011. It's a fascinating read,  especially when they put forward the vision of a personal data ecosystem where individuals can have greater control over their personal data, digital identity and online privacy, and they will be better compensated for providing others with access to their personal data.

Sounds great, right? Sadly, it doesn't look like we are on the path to that vision.

For this vision to manifest itself, healthcare companies must buy into it, which means that they have to evolve their current business practices and models. The same is true for governments around the world. Given the recent revelations from Edward Snowden, making this vision a reality seems unlikely.

Does anyone believe we should own our health data?

Due to my background, I think a lot about our health data and the steps that we can take as citizens to help in the creation of this vision. I even gave a TEDx talk with my own ideas.

Though some leaders in the industry, such as Walter de Brouwer are stepping forward and bravely advocating that patients should own their own health data,  it's not the norm. Business models for free health apps are based upon users giving permission for those apps to collect, transmit, share and sell their users' personal data.

What are the current risks?

The current estimate is that are 40,000 health apps in the market place. In addition, a recent study by the Privacy Rights Clearinghouse stated that 72% of the assessed health apps presented medium to high risk of personal privacy violation. Additionally, of the free apps they reviewed, only 43% provided a link to a website privacy policy.

When was the last time you read through the terms and conditions, end user licence agreement or privacy policy BEFORE you agreed to download a health app? Take a look at this example of the privacy policy of Fitbit, would you read this?

Now, you may think that your health data alone is not that valuable, and you may well be right. However, if 100,000 people are using a health app, and a corporation accessing that data has heart rate, activity levels, sleep levels etc on all 100,000 people, then that 'cohort' of data becomes considerably more valuable. Whether it's scientists in a pharmaceutical company looking to understand people's health or a fitness company looking to understand which consumers to target for their next fitness product, getting access to this type of data unlocks new value for these organisations. That's not necessarily a bad thing, because we all want society to make progress in improving our health.

Unfortunately, I don't believe that consumers are currently able to make an informed choice. Unless you read through every line of all the policies, it's not that easy to find answers to these 3 questions;

Who owns your data?

Who has access to your data?

Who profits from your data?

Someone must be doing something to help answer these questions? 

The US government has recently published new proposals that lay out a "voluntary" Code of Conduct for mobile application short notices. Whilst it's a modest step forward, it's not enough. With almost 20 years of working with other people's personal data, I knew I had to do something.

As luck would have it, I was introduced to one of the leading  experts in security and privacy of health data, Dr Tyrone Grandison based in the USA. We identified the need for  a simple way of consumers being able to understand what they are agreeing to BEFORE they download a health app.

Dr Grandison and myself are working on a new service, launching this summer, called 'Who Owns Your Health Data?'. We hope that our service will allow each of you to make an informed choice when it comes to health apps. 

We are open to collaborating with others who share the same goal. Feel free to email us at info@woyhd.org

7 billion Citizen Scientists?

So, my TEDx talk has now been uploaded! 

A big Thank You to all the feedback from people around the world who have viewed my talk. I acknowledge that some might argue with the specifics of my vision, but I believe that the direction of my vision is accurate. People who have seen me speak before did say I look nervous at points during the talk. Yup, I'm human, I was nervous giving a talk to 1,200 people. In hindsight, I'd invest in working with a 'public speaking' coach prior to giving such a talk. 

Someone from Germany who watched my talk, contacted me recently. It was rewarding to hear that the ideas mentioned in my talk had inspired him to consider founding a startup in the arena of patient data.  

Who owns, accesses and profits from our health data? 

In the 21st century, the only people really thinking about the power of 'Big Data' are governments and corporations. 

Don't get me wrong, my TEDx talk is not against governments or corporations. It's about getting 7 BILLION patients on the planet to realise the VALUE and POWER of their health data, and to decide which scenario they prefer:

  1. Governments and a few corporations having all the power

  2. Governments and corporations 'sharing' the power with patients

The recent revelations about PRISM and our data is quite timely for having an open and mature dialogue about our health data? Maybe consumers aren't that bothered how many governments and corporations have access to their personal data? Watching this 30 minute talk by the CIA's CTO, Ira Hunt, even he concluded by saying we should be asking, 'What are our rights? Who owns our data?'. He mentions that by owning and using a mobile phone, we are already mobile sensor platforms, and will soon become mobile health platforms. I recently discovered the DataMap, by the Data Privacy Lab at Harvard University. If you're a patient in the USA, isn't it fascinating to see a map of the different entities that can get hold of your health data? THINK about it, this is BEFORE we start using the smartphone as the healthcare delivery platform.

7 billion citizen scientists. Merely a pipe dream?

In my talk, I mentioned   Our Health Data Cooperative and BRIDGE, two American initiatives that share many of the values of my vision.

I recently heard about a proposal to form a global alliance to build a data-sharing future for genomic data. This is exciting news, especially for those who want to discover cures for rare diseases [80% of rare diseases are caused by faulty genes] However, reading through their White Paper, I noticed this text on Page 5;

Patients need a trusted route for the altruistic sharing of personal genetic information to accelerate progress, including ways to manage privacy and consent 

I challenge the notion that patients should just donate their valuable health data for free to researchers in the name of advancing human health. What do YOU think? 

Then on Page 16, I noticed that Amazon Web Services, Google and Microsoft had been involved in one of their meetings held in Santa Cruz on Dec 20th, 2012. I'm not jumping to conclusions, but after recent events, I'm just a little bit more wary of certain US tech companies and my personal data. 

I still believe we need a new type of global data sharing organisation created by patients, run by patients and for the benefit of patients. A global patient data cooperative? In the 21st century, perhaps we need to establish the WPO (World Patient Organisation)? I searched to see if WPO already exists, it doesn't. However, I found IAPO (International Alliance of Patient Organisations). Anyone from IAPO reading this blog? 

If creating a new global patient run organisation seems impossible, perhaps a pragmatic path would be develop new health data exchange standards? For example, a group of 50,000 Diabetics in the US who have pooled their health data, would be able to pool their data with 100,000 Diabetics in India, and 100,000 Diabetics in China? Remember, I'm talking about the real-time health data that patients have captured from their bodies between visits to the doctor using their smartphones. Maybe the world isn't yet ready for 7 billion Citizen Scientists? 

A marketplace for patients to trade their health data? 

Late night discussions with a few people have led to the concept of an online marketplace in the future, where groups of patients around the world can sell 'access' to their health data? [Note. In my vision, patients will always own their health data]. Let's call it 'HDM', the Health Data Marketplace. 

When I have talked to people about the example from my talk of the patient in rural Africa who gets paid by a Western pharmaceutical company for access to their real-time health data captured by their phone, their first reaction is, 'How would the patient in rural Africa receive the payment?'. I mention M-Pesa, and explain that In sub-Saharan Africa, more people have a mobile money account than are are signed up for Facebook!

Given that we already have online patient communities centered around one or more related diseases such as Crohnology, CancerCommons, SmartPatients and RareShare, will those communities also be listing their datasets on the HDM? Who would own and run the HDM? How would ensure that the HDM was not used fraudently? How can we ensure the security and privacy of patient data? How would we verify that the data being listed is actually the data of those patients? Is the idea of a HDM even ethical? 

Just as in my talk, I acknowledge there are major barriers to any of my ideas becoming reality. Governance, regulation, standards, privacy, security and most importantly, interest. All my crazy ideas will go nowhere unless there is a critical mass of voices from around the globe.

I appreciate, I've raised more questions than answers. My vision is far off into the future, but if WE want it to happen, we have to start having the discussion NOW.

I'm really interested in your thoughts about my ideas. I invite you to leave a comment here, tweet me, or send me an email.