Burning Man and Innovation - What's the connection?

What is Burning Man? 

Some call it the biggest party on the planet. Wikipedia mentions that it is described as an experiment in community, art, radical self-expression, and radical self-reliance. The Burning Man website says that trying to explain what Burning Man is to someone who has never been to the event is a bit like trying to explain what a particular colour looks like to someone who is blind.

It's linked to startup culture, since Eric Schmidt, the CEO of Google was hired by Sergey Brin, and Larry Page in 2001, partly because "He was the only candidate who had been to Burning Man". I remember spending 2 days during 2012 at an unconference in Google's Mountain View headquarters. In one of the buildings, I noticed many photographs of Burning Man plastered over multiple walls. One of my hosts told me, he takes his entire team from Google to Burning Man each year. 

I heard that many startups are created during those 8 days in the dusty Nevada desert each year. If you stand up at many tech events in Silicon Valley and ask the 'burners' in the room to put their hands up, a lot of hands go up! ['Burner' is the term used to describe people that have attended] Whatever your opinion, it's most definitely a unique experience. Trying to reach many of my friends in Silicon Valley when Burning Man occurs is usually tough, as many are at Black Rock City.

Why did I attend? 

I tracked down one of the motorised cupcakes the next morning.

I tracked down one of the motorised cupcakes the next morning.

It was 2010, I was on my 6 month round the world trip. I had no plans to visit the USA during my journey, but a very good friend who had been to Burning Man in 2009, insisted that I needed to go. He told me that this would change my life. Nothing would prepare me for what I was going to experience. He was right as I'm still digesting the experience of attending Burning Man, 4 years later! 

The experience

It's simply staggering, how 50,000 strangers come together and build a city in the desert, including streets!  How do you describe riding a bike at 2am in the desert, and hearing a stranger call out, "Dude, you're awesome!"? Zooming alongside me, was a guy driving a motorised cupcake, decorated with flashing lights.

One of the 10 principles of Burning Man, is gifting. I will never forget walking down one of the main streets on an extremely hot day, and seeing a queue of people. Someone was gifting ice cream! Another principle is radical inclusion. There was an amazing atmosphere of tolerance and acceptance. Nobody was judging you. I recall walking down the street, and a guy in a yellow alien outfit needed help finding the toilets. His costume didn't fit very well, and he couldn't see out of it easily. As I helped him to his destination, we chatted. It turns out his was a high flying corporate lawyer from Washington, DC. Yes, there were quite a few naked people wandering around as well, including some very beautiful women! At first, it was really bizarre. After a couple of days, you just got used to another of those 10 principles, Radical Self-expression. 

beyourself.jpg

I'll never forget meeting a chap called 'Mitch' one day, who was from Montana. He was mid 50s, and his wife had just left him. Instead of lounging in self-pity, he packed a small backpack, grabbed his bicycle and cycled alone 800 miles south to take part in Burning Man. Mitch had run out of food & water after 3 days in his tent. So I invited him to our 'camp' to have dinner with us, and we learned more about his life story. Another one of the principles, is Radical Self-reliance. 

How did it impact my approach to innovation? 

It definitely impacted my creative approach to problem solving. When solving problems at work, you go through many ideas. The level of creativity expressed at Burning Man was simply exceptional [and that's over and above my experience of working in an advertising agency]. I believe many of the innovative projects I've delivered in the last few years are inspired by what I saw and heard on the 'playa'. 

The concept of gifting, without expecting anything in return really inspired me. When I was at GSK, I spent lunchtimes working on organising events to bring different people from the company together to network and exchange ideas. It wasn't part of my job description, and it wouldn't lead to a bigger bonus or increase in pay. Some colleagues asked me, Why are you doing this? I also founded Health 2.0 London based upon the principle of gifting. I do my best to curate each event like a mini TED conference, and my time was not paid, and there was no charge for attendance. Again, people kept asking me, What do you get out of this? You could be using your time on paid projects. 

The other principle I experienced was participation.  Taken from the website,

"We believe that transformative change, whether in the individual or in society, can occur only through the medium of deeply personal participation. We achieve being through doing. Everyone is invited to work. Everyone is invited to play."

The view of the street from our camp

The view of the street from our camp

So, whether I'm inviting people to a Health 2.0 London event, or working with one of my clients, I do my best to include people in the work I'm looking to do, and despite wearing different 'hats' we all have a contribution to make. I remember writing an email at GSK to one of the senior leaders in R&D suggesting he fine tune his future messages when delivering global webcasts to employees. To ask everyone to participate in the journey of making a medicine, from the janitors to the most senior leaders.

In the emerging area of Digital Health, I believe we need everyone to participate in innovation, not just startups, but healthcare professionals, government, corporations and academia too! 

It's also strengthened my links with that hotbed of innovation, Silicon Valley, as many of the 'burners' I have come to know work out there. I consider myself extremely privileged to have been able to participate in Burning Man, and the personal and professional growth as a result.

Critics of Burning Man argue that despite it's counterculture origins, it's become an elitist and pretentious event, attended mostly by wealthy corporate folks from California and Oregon. There is also the fact that you don't see that many people of colour there. The experience can be so bizarre, your mind has such a problem adjusting after the event concludes, that you have to 'decompress'. It's definitely not everyone's cup of tea. 

Even if you choose that Burning Man isn't for you, I just have one thing to say to you, "You're awesome, dude!".

Cycling was the best way of getting around the community

Cycling was the best way of getting around the community

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Thinking the unthinkable

In Boston, a couple of weeks ago, I gave an updated version of my talk, "Will advancing technology make doctors unemployed?" It was well received, and sparked a number of conversations after the event.

I opened the talk by referencing that I'd taken part in the 238th re-enactment of the Boston Tea Party in December 2011. Why are the events of 1773 relevant to healthcare in 2014? It's because those people that gathered in Boston all those years ago, thought the unthinkable, they challenged the status quo, not just with words, but with action! That episode escalated into the American revolution, and ultimately independence of America from the British Empire. 

[Speaking of Empires, I found this wonderful book published in 1971, titled; The American Health Empire: Power Profit & Politics]

Please don't be mistaken, I certainly don't compare myself to the brave visionaries who stood up to the most powerful entity on the planet at that time. However, the mindset shown by the people who weren't afraid to consider an alternative future, who dared to dream of a different reality, has inspired me to do what I do. 

I'm used to being ridiculed for my ideas when it comes to data & technology, some say I'm silly, some will say I'm a dreamer, but I ask you something?

Is it wrong to dream of a world where we have zero medical errors? Is it wrong to dream of a world where we can use technology to improve the lives of the most vulnerable members of our society? Is it wrong to dream of a world where 1 billion people who've never had access to a doctor or a hospital, might use a mobile device to access healthcare?

I hold my hands up, I'm guilty of being a dreamer. Many of us dream of a better future, not just for us, but our children, and their children. I'm one of them, and hard working people I meet during my travels around the world also have dreams. 

Now, it's truly fascinating to observe the spectrum of opinions when it comes to the future of technology in healthcare. Take the contrasting statements of two UK doctors on Twitter. 

I'm the first to admit, there is significant froth and hype in the emerging arena of Digital Health, and it's critical that we are able to successfully discriminate between the technology that can really transform healthcare, vs technology that doesn't do much at all (or even puts patients at risk). You'll see that in my recent TEDx talk on 'How Digital Health technologies could make Guernsey the best place to live on Earth', that I remark on the need for Evidence based Digital Health.

Having said that, we must be mindful not to make the process of evaluating & adopting Digital Health so laborious & dogmatic that we stifle the very innovation that patients are most in need of.

One of the thought leaders in Digital Health who continues to inspire me to think differently, is Lucien Engelen, in the Netherlands. He recently published a post, Dr Apple & Dr Google will see you know on LinkedIn. The post is wonderful, but what's really illuminating is reading the full range of comments on his post.

Lucien closes his post by remarking, "For all I know we need extraordinary solutions to the challenges ahead, maybe even moonshots" [For those of you wondering what a moonshot is, in the context of technology, I recommend this great post from Google]

Just published today is a provocative post titled 'Creating a parallel system to health care', by Dr Pritpal S Tamber, a fearless visionary, who always challenges my beliefs. Not only is he a medical doctor, but he's also the pioneer of Wellthcare,  which is an exploration, and an attempt to find new ways to create and value health. [I am honoured to be a Wellthcare Explorer].

In his post , Dr Tamber asks, "Health needs an 'Institute For New Health Thinking'. It needs a safe space for people to propose and debate new thinking on creating health. But who will lead this?" - I suggest reading his earlier posts, he repeatedly asks questions that his peers may well classify as 'thinking the unthinkable'.  

What do YOU believe?

Should we ONLY be thinking of solutions that can integrate within the context of the existing system of health & social care?

Who should be allowed to innovate in Digital Health? Only people who've been to medical school?

Are we wasting our time considering a future where we might not need so many physical hospitals?

Should the needs of the few outweigh the needs of the many? 

Do we tell our children that dreaming of solving humanity's biggest challenges is not a good use of their time? 

I know that if I had not dared to 'think the unthinkable' back in 2012 when I quit my job, I probably wouldn't be here writing this blog post today. 

Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do - Steve Jobs

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The power of grassroots communities to transform health & social care

I hired the function room in this London pub for the first two events I ran! 

I hired the function room in this London pub for the first two events I ran! 

Just over 2 years ago, as a volunteer, I founded the Health 2.0 London Chapter, which has since grown to over 630 members and has become the largest health tech grassroots community in the UK. I'm going to share why I did this, the experience & the impact on health & social care in the UK. 

 

 

The need for diverse grassroots communities

I've wrote in my first ever blog post about how starting the Health 2.0 London Chapter was part of me venturing out from GSK into the unknown. I observed that events in healthcare were often very expensive to attend & either focused on the tech, or the clinical aspects, the NHS, or investment opportunities. Nothing wrong with that, but there wasn't one space where all those groups could come together, with a genuine focus on the patient. I've always enjoyed bringing diverse groups of people together, whether it's at work or outside. At the end of my recent trip to Boston in the USA, I hosted a 'mindful' dinner for 10 amazing people that didn't know one another, some of whom I'd never met, but had formed friendships on Twitter. 

Back to Health 2.0 London, the turning point was the event I ran in Nov 2012 on 'Disruptive Innovation in Clinical Trials'. I decided I wanted to try having a real patient start the event, by sharing their experience of participating in a clinical trial. We had the wonderful Jeri Burtchell, a patient from the USA share her story in a Skype video call, displayed on the big screen in the venue.  

During the Q&A after her talk, I witnessed men & women from the audience coming up to my laptop, and giving feedback to Jeri via the webcam, with tears in their eyes. Yes, Jeri's stories of her experience of clinical trials as a patient was something many in the audience had never heard, despite many of them working in the field of clinical trials. Her fears, her concerns, & her hopes for the future, shared with a group of strangers in London. We then had an industry expert speak, followed by a startup. 

After the 3 talks finished, what was magical was witnessing the new conversations between people who might normally never meet. A mobile app developer, an academic & a clinical trials expert, exchanging ideas on how they might work together to improve the patient experience during a clinical trial. It was incredibly rewarding to witness this unique energy at an event I'd curated. Don't take my word for it, you can read the reviews of the Chapter by attendees here.

I curated and ran 20 Chapter meetings since I founded the Chapter, with the help of Mateusz Tylicki, my assistant organiser. A wide range of events, with just a few memorable events listed below;

Information Obesity: A possible side effect of Digital Health?

Care Homes: How can data & technology impact the lives of vulnerable patients?

Digital Health in UK hospitals: Hope or Hype? 

You can't do it alone!

I'm fiercely independent, and don't like to rely upon anyone, but I learnt that you have to be humble enough to ask for help. Special thanks to Mateusz Tylicki who helped me with every event, and each of the speakers who shared their time, expertise & insights (for free) with the Chapter. Ultimately, it was the people who coped with travels through London rush hour to attend our events on Wednesday evenings, that helped build a healthy and vibrant community.  In the beginning, as the community grew, I couldn't continue to hold the meetings above a pub in London, I needed a proper venue. Dawson King, a UK healthcare entrepreneur was our first sponsor, and helped us when we needed it the most.

Most recently, it was David Dowe at the ICT Knowledge Transfer Network (itself funded by the Technology Strategy Board), who approached me back in 2012 and offered to support the Chapter by providing a venue & food/drinks for nearly every event since Nov 2012. 

I believe there are now over 70 Health 2.0 Chapters around the globe, and I got to know other Chapter Leaders such as Eugene Borukhovich (Amsterdam), Sebastian Yuen (Birmingham, UK), Alex Fair (New York), Liam Ryan (Dublin), Ben Heubl (Copenhagen), Juliane Zielonka (Berlin) & Idalia Dawidowska (Manchester, UK). Each of them inspired me to keep pushing the boundaries!

Finally, a big thanks to Matthew Holt, Indu Subaiya & Pascal Lardier from Health 2.0 for their support along the way! 

What else helped build this community?

  • Having small meetings with a clear focus. I attended many tech meetups in London, some of which had up to 200 people attend. I wanted to create something different with Health 2.0 London, a more intimate dialogue, where it's possible to talk to everyone during the course of the evening. That's why I capped attendance at 40-45 people each time. 

  • Placing filters on who can join the Chapter. The Chapter was managed via meetup.com, and anyone wishing to join the Chapter had to answer a few questions when applying to join the group, and I would review each application personally. With experience, I learnt how to spot applications from those people genuinely interested in being part of this grassroots community. 

  • Not charging for attendance. I never once charged people to attend. My desire was to give everyone a chance to participate in this community, especially students, & others with limited finances.  

So, what was the impact on UK health & social care? 

Enough about me, how did people benefit from being part of the Chapter? I've included a few quotes below. 

"The ICTKN was delighted to support the growth of Health 2.0 London. When I first met Maneesh, I could see that he really understood the need for a new community in this area, and was prepared to put the hard work into finding speakers and building interest, so we were really happy to support his efforts. 

We’re very glad that its turned out to be such a success - its vital that this community continues to meet, to understand the opportunities which Digital Health presents and to continue to challenge accepted wisdom in health” - David Dowe, ICTKTN

"The meetings have been stimulating – brain food. I’ve met interesting people, useful contacts and seen new opportunities for research, including a letter of support from Maneesh for a PhD programme in Digital Health. Maneesh has been a visionary Chapter leader, constantly challenging accepted paradigms and raising thought-provoking topics for discussion." - Dr. Jacky Pallas, Director, UCL Research Platforms

Bruce Hellman

Bruce Hellman

"It's an incredibly exciting time to be a Digital Health start-up, with a massively growing market and a hugely supportive and encouraging ecosystem developing.  Fora such as the London Health 2.0 meetup group have really crystallised the ecosystem and network, and presenting has certainly helped us develop new relationships and gather new insights." - Bruce Hellman, co-founder & CEO, uMotif

 

 

 

 

 

The future of Health 2.0 London 

It's been extremely rewarding, but it's taken a lot of effort to get to this point. I put my heart & soul into everything that I do, whether I'm being paid or volunteering. 

Cristina de Juan

Cristina de Juan

Now that I'm becoming a lot busier with my own consultancy work in Digital Health, I recently stepped down as Chapter Leader. It's also good to give new people to bring fresh leadership to the community. 

There are two new Chapter Leaders, Mateusz Tylicki & Cristina de Juan, and I have every confidence they will do a fantastic job taking this community to the next level. 

"I'm very excited about the opportunity to take the Health 2.0 London Chapter forward. My aim in this role is to bring healthcare innovators together to ensure the UK is a leading country in Digital Health, with the ultimate of goal of helping patients." - Cristina de Juan, VP Clinical Partnerships, TrialReach 

Cristina & Mat did a sterling job at their first event last week which questioned the true impact of giving patients more data! 

In a brilliant Wired UK article, Ben Heubl, observes that Boris Johnson [Mayor of London] recently launched MedCity, an initiative to build the world's most powerful life sciences cluster, which appears to neglect the emerging Digital Health sector in London.

Could this gap in official support be an opportunity for a grassroots community like Health 2.0 London? I'm convinced through first hand experience that grassroots communities can make a difference in health & social care. It doesn't have to be technology that is the main focus, it's simply about bringing people together, discussing real world problems and creating a safe environment where people can express themselves & share (often radical) ideas without fear of being judged. 

What's next for me? 

During my visit to Boston, a reminder in a restaurant of the perception that there are differences between the 'Old World' & the 'New World'

During my visit to Boston, a reminder in a restaurant of the perception that there are differences between the 'Old World' & the 'New World'

As an entrepreneur, it's fun to experiment and try new things. I'm increasingly finding that clients are approaching me with particular problems because they view me as the bridge between the 'old world' of healthcare, and the 'new world' of Digital Health.

I recently spent a week in Boston, USA [which London's MedCity is aiming to compete with], and found it a very enlightening visit.

I met one Digital Health entrepreneur there, who remarked, "London?! Don't you feel limited there? In Boston, we believe that anything is possible."

Indeed, there still seems to an 'Old World' mindset in Europe that seems to lead to less risk taking, but it's changing.

My mind is very restless, and comes up with new ideas all the time! As someone with a data background, I'm becoming increasingly curious about how Open Data could make an even bigger difference in healthcare & social care. 

I'm delighted to be part of a panel discussion in London on April 30th 2014, 'Facilitating Innovation with Open Health Data', hosted by the Connected Digital Economy Catapult.

It's free to attend, and whilst primarily aimed at SMEs and Digital Health startups, anyone with an interest in Open Data & the Digital Economy should definitely consider attending. I'm hoping the event & subsequent discussions will help stimulate new ideas, new startups & new solutions that can ultimately help patients and remind us that the 'Old World' can still generate world class innovations. 

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The dark side of wearable technology

An update on my talk in Boston, Will advancing technology make doctors unemployed?. 

It's confirmed for Fri April 11th at 12pm. The format will be a lunchtime session, with time for questions, and tickets are free. I believe there are still a few tickets available. Big thanks to Maggie Delano, Joshua Kotfila & Hack Reduce for helping me make this event a reality!

So, Wearable Technology, we are hearing more and more about it in 2014. New research is forecasting that wearable tech will become even more popular than tablets. Our lives will change, our health will improve, and generally it's simply amazing, right? The use of Google Glass in Houston to allow sick kids to virtually visit the zoo is one of the wonderful applications I've seen. Today, the headline in the local newspaper in Boston was about a local hospital that is the 1st hospital in the USA to employ Google Glass in everyday medical care, expanding it's use across the entire Emergency department.

However, my views on wearable technology have been challenged recently, which prompted me to write this blog. There is a dark side to this technology, and it's fascinating to see the headlines touting the benefits but not always mentioning the risks.

I was invited to speak at an event in London, hosted by NESTA in March 2014. The event was titled, Data, health and me: the future of people-powered healthcare , and I shared my research on the emergence of personal data marketplaces & the future scenario where patients can profit from selling their health data which has been collected using wearable technology. My research has also been cited in the recent report, Refilling the Innovator's Prescription: The new wave of medtech, produced by NESTA & Silicon Valley comes to UK,  

There is a great Storify summarising my talk, as well as the talks by the other 3 speakers.

One of the exercises we were set, was to examine a possible future in the year 2024, where it's so lucrative for patients to sell their health data, that they can use wearable technology to 'amplify' their illness or even perhaps give themselves an ilness? It sounds preposterous, but look at what happens today in India. Deliberately maiming children to increase profit from begging. As healthcare costs continue to spiral, OUR personal health data, will only become MORE valuable in the future.  

The discussion in our group was thought provoking, as our small group discussed the moral, social, legal, & cultural implications. How would a doctor know that your illness occurred naturally or you used wearable technology to give yourself the illness? What circumstances would compel healthy people to do this? Would it be the poorest sections of society who realised one of the few assets they have is their health data? Would there a black market in 'patches' that when applied to the skin would give you diabetes? All of this really made me think again about the concept of selling our health data to governments, pharmaceuticals & health insurers. It's not that simple as I originally anticipated, and I'd welcome comments from readers on the intersection of wearable tech, personal health data and these new marketplaces. Kudos to Jessica Bland & Cassie Robinson for hosting & curating this event. There is a great video with soundbites from participants, definitely worth watching. Incidentally, on the same day, there was an event in New York, on the Social, Cultural & Ethical Dimensions of “Big Data." I'm proud that the UK is not lagging behind the US when it comes to thinking about the future.

I came across a Google Hangout from an event in New York, discussing Augmented Reality & Privacy in the future. Featuring John C Havens, Dawn Jutla, and Jules Polonetsky, it was an inspiring 1 hour. Again, speakers who made me rethink my beliefs, assumptions and attitudes towards wearable technology with their sharp insights.

Think about the use of Google Glass in the Boston hospital. When rushed out of the ambulance into the ER room, are you really going to be in a position to ask where your face or voice data may be going, and who has access to it?

It's scary enough to consider these questions when thinking of our own privacy & security, but even more frightening when thinking how wearable technology could be used to do harm to our children? Fast forward 5 or 10 years, and if most kids are given wearable technology so that their parents, teachers & doctors can monitor their health and movements in real-time, are we considering that these data are also of interest to criminals? Children may be warned not just to avoid talking to strangers, but to avoid strangers with laptops sitting next to them on a train as their personal data may be being hacked!

An article this week reports how "Companies are ignoring serious security issues in their rush to release next-generation wearable devices, according to Symantec."

There are other risks associated with the expansion of wearable tech in our lives, but I've highlighted just a couple of scenarios that warrant further thought. It's important that we find a balance between creating conditions that encourage entrepreneurs to take the risks to experiment with these new ideas, but at the same time, we can't let our enthusiasm for new shiny gadgets blind us from discussing how we govern use of this (or any) technology in society.

I don't know if we have the answers, as we are not even confident in defining the questions. However, the wearable technology market is evolving at such a rapid pace, it's critical that we take time out to both, ask those questions, and answer them. Without that pause, we run the risk of society eagerly adopting and evangelising these products without pausing to consider the ramifications on different members of our communities.

If you are in Boston this week, and can't attend my talk on Friday, I'd definitely like to connect, especially if you're a wearable tech startup.  

[Disclosure: I have no commercial ties with the companies/individuals mentioned]

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An app a day keeps the doctor away?

An app a day keeps the doctor away may very well be what our children hear as they grow up in the 21st century. During my research, I found that the origin of the familiar phrase, "An apple a day keeps the doctor away", may have originated 148 years ago in Wales, UK . 

A Pembrokeshire proverb. Eat an apple on going to bed, And you'll keep the doctor from earning his bread.

Before I talk about apps replacing apples, I'd like to share some of the feedback that's been generated from my last blog post on tech making doctors unemployed. It's triggered a healthy debate within & outside the medical profession. I'm not sure doctors like me anymore! 

I've had docs email me saying stop pushing this kind of talk, I need to put my kids through college. Some of the younger doctors have responded positively, understanding that they might benefit by having digital skills as a doctor. Many older docs seem to be terrified, and some docs of all ages seem to be responding to the threat with at attitude of "Bring it on!"

All of this has really made me think deeply about the choices we face in society in this increasingly automated world. A visit to a London supermarket this week compelled me to ask this question. 

Whilst some doctors may be outraged that I have the audacity to even challenge the notion that their work cannot be automated by machines, there are deeper questions facing ALL of us in society. This recent Guardian article which has the headline, "When robots take our jobs, humans will be the new 1%. Here's how to fight back."

Even much of the work I've done for the past 20 years, in the realm of data analytics, is being handled by machines and software now. In fact, as a Futurist, I may be joining the doctors at the unemployment office in 2025, given that robots are now writing news stories, and some believe that 90% of the news could be written by computers by 2030.

Is the future that we're heading towards really the future we desire? If it isn't the future we desire, whose responsibility is to intervene? Should governments create policies that encourage institutions to retain human workers, even when the human is more expensive than the machine? Should the CEO of a corporation also wear the hat of Chief Ethics Officer? 

Will getting an app on prescription become the norm?

Many people including patients in rich countries may roll their eyes at using their mobile phone for healthcare, but patients in low and middle income have been using mobile phones in healthcare for several years, frequently using text messages with more basic phones, not apps with smartphones.

In fact, Africa is home to the largest number of mHealth projects in the world. A list with examples of projects can be found here. Patients in the US during 2014 will be able to download the world's first doctor prescribed app, Bluestar, for helping them to manage Type 2 Diabetes. This is a massive step, and could it be a signal of times to come? 

Well, a recent poll of physicians in the US revealed that "37% have no idea what apps are out there."

According to research conducted by Digitas Health in 2013, 90% of chronic patients in the US would accept a mobile app prescription from their doctor. Do you know what proportion of those patients said they would accept a prescription of medication? Just 66%!

So, this is the future, right? Well, doctors have a right to be wary of apps. In a previous blog post, I mentioned how a certification program for health apps allowed an app to be certified which had flaws relating to protection of data in the app. We are heading into uncharted waters, and mistakes are to be expected. Looking beyond the hyperbole, the key question for me (and the regulators) is, do the benefits outweigh the risks? 

Source: Pew Internet Research Project

Source: Pew Internet Research Project

The conclusions of the first ever cross-stakeholder Pan-European seminar on Health Apps & how patients, policy-makers, healthcare professionals and industry see the future was recently published in a white paper. What I find encouraging in the paper is the that EU has made it clear that it does NOT want to discourage the burgeoning market for health apps by producing excessive red tape.

As Digital Health becomes more prevalent, the scenario of doctors everyday weighing up whether to prescribe an app or a medication to a patient is entirely possible in just a few years. However, as this recent paper in JAMA remarks, we will need an unbiased review & certification process for health apps, if this is to happen.

Exciting stuff, but I can't help but also wonder, exactly how much of an impact will prescribing of apps really make on healthcare, given that just 18% of Americans aged over 65 own a smartphone? That figure drops to 8% for those over 65s with annual household income of $30,000 or less!

Should we be asking innovators to focus their energy on technologies that solve the problems of the biggest users of healthcare, those aged over 65? Will many basic problems in healthcare remain unresolved, as the 'worried well' develop amazing technology, to be used primarily by the 'worried well'?

What role will community pharmacies play in public health if prescribing of apps takes off and fewer people actually walk into a physical pharmacy? Will apps cause pharmacists to also become unemployed in the long term? 

What is the impact on the future of the pharmaceutical industry which is not just slower than other sectors to adapt, but also employs considerable numbers of people around the globe? IMS Health, the world's largest health data broker, has launched AppScript, a platform that offers doctors easy, secure and evidence-based app prescribing.

What about absurdly simple problems, such as being prescribed an app, but your smartphone's battery barely lasts the whole day, and the battery could die just as you really need to use the app to manage your condition. A tablet doesn't need a power source. 

What about the impact on our eyes? Opticians have recently warned that overuse of smartphones may damage your eyes.

What's the impact on the fabric of our society if in the future, we can both be diagnosed & treated from the comfort of our own home just using a our smartphone combined with an app & a tricorder?

Scanadu Scout 

Scanadu Scout 

Not long to wait to answer that question! The combination of the long awaited Scanadu Scout and their app on Monday may indeed make the phrase, an app a day keeps the doctor away, part of our everyday vocabulary. The latest blog post from Scanadu, mentions "placing it over the forehead to take a composite, multi-parameter biometric signature that pulls in several vital signs in seconds: diastolic and systolic blood pressure, body temperature (core temperature is coming in a couple of weeks), SPO2 (blood oxygenation), and heart rate." 

I should be getting my hands on a unit soon, and look forward to sharing my feedback with you!

One more thing, what if the apps in our cars in the future 'prescribed' us a different route home to improve our health? Given Apple's development of CarPlay, I mocked up a possible scenario of the world we could be heading towards. The question again - is this a desirable world?

Asking Siri to navigate home may never be the same again.

My next talk - Boston!

I'm going to be passing through Boston, MA in 2 weeks time. It's last minute, but I'm hoping to be able to give a talk there on whether tech will make doctors unemployed and also share some of my ideas & thoughts on how the medical profession could adapt to this rapidly changing world of Digital Health. As soon as it's confirmed, I'll share the details on Twitter. If whilst I'm in Boston, your organisation wishes to book me as a speaker, please see my Public Speaking page.

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

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Healthcare in the future: Will advancing technology make doctors unemployed?

Yesterday, I spoke on this topic at Anticipating 2025, an event hosted by London Futurists.   [The talk was video recorded, and I will share when it's online]. The organiser, David Wood, is a smartphone pioneer, having been a co-founder of Symbian, the world’s first successful smartphone operating system. 

Vinod Khosla's controversial comments back in 2012, were (and still are) very provocative, "By 2025, 80 percent of the functions doctors do will be done much better and much more cheaply by machines and machine learned algorithms." 

2 years later, technology continues to advance, and we have more conferences on topics such as Wearable Tech and the Internet of Things. Healthcare is a complex & heavily regulated environment, and slow to change as the wrong decisions can cause harm to patients, and even death. The cost of healthcare, if allowed to continue rising is unsustainable. Today, it's reported that the NHS needs another £2bn. In the US, the 3rd leading cause of death is medical error, we have a shortage of 4.3 million doctors & nurses on this planet, and 1 billion people have no access to a doctor, hospital or clinic. I am always thinking, how can technology help?

Prevention of disease seems to be high up on the agenda in today's world. Well, what if all these new technologies heading our way can dramatically improve prevention? With sensors, what if our health could be monitored by the objects that are already around in our daily lives? Our phone, toilet, our shirt, our bed, our car? 

How do we feel with machines knowing more about our health than either us or our doctors?

What are the ethical, legal & social implications in the future if you stick an "electronic tattoo" on the body of your elderly parent with dementia/newborn baby to monitor vitals & stream data to you & your healthcare provider/insurer when 'informed consent' is not possible?

Do we want smart vending machines that recognise who we are as we stand it front of it, knows from our medical records that we have high cholesterol, syncs with our wearable activity tracker to determine we haven't had much sleep last night and rarely exercise? When we press the buttons selecting a chocolate bar and a can of Coca-Cola, and the smart vending machine suggests we select a granola bar and coconut water, do we feel comfortable with a vending machine using our data to remind us to make healthy choices?

 

Last night, before going to bed, I used an AliveCor device with my iPhone to record my ECG, and paid $8 to get a clinical analysis report within 24 hours. Less than 12 hours later, I open the app to find the report has been delivered. If I can do this in 2014 with equipment available to consumers, from the comfort of my bed in my own home late at night, without going to see a doctor at a hospital, what could we do in 2025?

Cloud Computing has enabled SaaS (Software as a Service), are we heading towards MaaS (Medicine as a Service)? No need to wait 7 days to see a doctor! Get your blood analysed anywhere, anytime using your mobile device? These guys in France are working to do exactly that with their Beta-Bioled, the first hand-held blood analyzer. In Switzerland, scientists are developing a blood test performed via the screen of your smartphone. 

What does this mean for physical hospitals and clinics? It's not just GPs that could be impacted. It's surgeons too. Imagine if we could take all the facilities, equipment and knowledge required to perform a successful surgery... and encode it in a single drop of saline. That's what Ido Bachelet is dreaming of when he talks about Surgical Nanorobotics at Solve for X in this video. 

Today there is no profit in preventing people getting sick. The more sick we are, the more job security a doctor has. Will advancing technology cause business models to evolve? Naturally, with possibility of a seismic shift in healthcare, power, profit & prestige are at risk. The conversation doesn't have to be adversarial. We have to remember, that sometimes in life, the needs of the many, outweigh the needs of the few. 

So, if technology does advance beyond our wildest expectations over the next 10 years, will the demand for doctors decline, or even disappear?

I believe we will still need humans in medicine - after all, delivering compassion & hope is not something a machine or a robot powered by artificial intelligence could do. When we are sick, we are weak, vulnerable & frightened. You need a human being to hold your hand & look you in the eye, and say "I'm here for you." Research shows that some older people visit their GP not because they are sick, but mainly because they are lonely. Will this push into Digital Health have a side effect of increasing loneliness & isolation?

 

Oxford University researchers published a study in 2013 where they estimated the probability of computerization of more than 700 occupations in the US. Overall, nearly 50% of occupations they analysed are at risk of disappearing. According to their model, the probability of doctors & surgeons being computerized over the next few decades is 0.4%. Not everyone in healthcare is safe though, medical record technicians are likely to disappear, and even 1 out of 5 epidemiologists.

[side note - Computer programmers are listed as 48%. It does make you wonder why governments are encouraging today's children to learn to 'code'. The infographic below is available here] 

Sources: University of Oxford, Carl Benedikt Frey and Michael A. OsborneGRAPHIC: AKI ITO / BLOOMBERG NEWS & DAVE MERRILL / BLOOMBERG VISUAL DATA

Sources: University of Oxford, Carl Benedikt Frey and Michael A. Osborne

GRAPHIC: AKI ITO / BLOOMBERG NEWS & DAVE MERRILL / BLOOMBERG VISUAL DATA

However, if much of what doctors do today gets automated, and they spend much more time delivering compassionate care, do they need to go through all that training in medical school? Does the definition of a human doctor change? Do doctors become nurses? With the explosion in data, be it genomic data or data from sensors and apps, is the doctor of 2025, a data detective?

Will the doctors who survive & prosper in 2025 be the ones that know Data Science, Computer Science, patient centred design as well as Biomedical science? A great blog post published yesterday by Kevin Wang, on how a smart washing machine helped him see the future for a safer ICU at the hospital. He's a quality and safety fellow, who wants want to integrate human-centered design into healthcare delivery and management. 

Will it become easier & cheaper to produce doctors and to eliminate the global shortage? Does this mean the 1 billion people finally get what the other 6 billion have got? Access to a doctor. 

If we don't manage to address the Digital Divide, will all this advancing technology simply increase inequalities in health? Will speedy diagnosis & treatment be the preserve of those wealthy enough to afford smart devices, sensors & the internet, whilst the poor have to wait several weeks to see an overworked human doctor? [Note: In Greece, a country of 11 million people, 65% of people have NEVER used the internet]

Just because we can use technology to automate tasks that humans do doesn't mean we have to do that. Despite all the promises, advancing technology isn't always used well, even by pioneers. Take Google Flu Trends (GFT), a program designed to provide real-time monitoring of flu cases around the world based on Google searches that match terms for flu-related activity. A new study shows that GFT over-predicted the prevalence of the flu in 100 out 108 weeks. This article describes the failings of Google's use of big data, and labels it, "automated arrogance."

Ultimately, technology has to serve the needs of humanity, not the other way round. 

My vision of where technology could take us in 2025

My vision of where technology could take us in 2025

I genuinely believe we can transform the world of healthcare at a global level, but it requires taking time out of the present to actively consider our shared future, and the wide ranging implications of advancing technology. Unthinkable as it sounds, doctors could become the dinosaurs of the 21st century, given the relentless pace of automation through technology.

If your organisation is wanting to understand how to survive & prosper over the next decade in an uncertain world, do get in touch.

[Disclosure: I have no commercial ties with any of the companies mentioned in this post.]

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The future of your health data

Your health data usually belongs to someone else. If you go see a doctor and are diagnosed, the electronic record of that diagnosis is stored and could be part of a much larger anonymised dataset. If you're in the US, you may be one of the 180 million patients whose health insurance claims data are part of the MarketScan data from Truven Health Analytics. If you're in England, you may be aware of the government's plans to build a dataset, called care.data containing the GP & Hospital data for the 53 million patients who live in England. If you use a activity tracker, such as FitBit etc., you're once again giving your personal health data away, which may or may not be sold in the future.

Naturally, one of the important applications of all these data are to improve human health, especially when it comes to medical researchers looking to understand how we get sick, and how we respond to drugs & vaccines in the real world. These data are also valuable to health insurers and healthcare providers when it comes to improving their services. 

Nearly a year ago, at TEDx O'Porto, I shared my radical vision of how 7 billion people could get paid for sharing their health data, as well as having full control over who can access that data. Many leaders in the healthcare arena have laughed at my dream, or have responded with silence. It tends to be patients & startups that get most excited at my ideas. That's understandable, as we are talking about big changes in how we collect health data, store it and sell it. These changes are not going to happen overnight, but I'm pleased to see that changes are happening faster than I anticipated. 

I read an article today in MIT Technology Review about a New York based startup, DataCoup. According to the article, "DataCoup are running a beta trial where people get $8 a month in return for access to a combination of their social media accounts, such as Facebook and Twitter, and the feed of transactions from a credit or debit card." Looking at DataCoup's website, it claims to be the 1st personal data marketplace. 

Interesting, the article, also says "The company also might offer people the option of sharing data from lifelogging devices such as the FitBit or parts of their Web search history." When I tweeted earlier today, DataCoup confirmed that incorporating health data is in their plans. 

The dawn of a new industry?

blogheartdata.jpg

This news is extremely exciting for me, and gives me hope that 2014 is likely to be a turning point in raising awareness of how valuable our health data is. If you suffer from multiple diseases, and take multiple medications, your data may be more valuable to 3rd parties than someone who is healthy and not on any medications. Many entities currently profit from using your health data. Time for patients to share in that profit?

There is also a London startup called Handshake that is also a personal data marketplace. Their website states, "Handshake is an app and a website that allows you to negotiate a price for your personal data directly with the companies that want to buy it.". They appear to be in a closed beta at the moment. 

Then you have the concept of patient data co-operatives. Our Health Data Co-Operative is in the US, and has recently been recognised by the White House as playing a role in promoting "Data to Knowledge to Action". The founder, Patrick Grant, states, "Our Health Data Cooperative is built on the premise that Patients should benefit economically from access by third parties to their health information."

Over to Europe, and I recently came across HealthBank. A patient data co-operative based in Switzerland, but aiming to build a global secure depository for patient data. Their website talks of patients having "a HealthBank account,  to store, access, manage and share their health data. And users can earn financial and other returns on their health data, similar to receiving returns from a bank account."

You've heard of Bitcoin, the cryptocurrency that's hit the news? What if you could trade your health data for Healthcoins that could be used to pay for your healthcare or for healthy food? There is a guy in the Netherlands, Andre Boorsma, who has put forward the concept of Healthcoins. I'm curious - would this concept be tried in Emerging Markets first? 

What's the catch?

Exciting stuff, and we are entering a new era in the creation & use of personal health data. However, there are important hurdles to overcome. The first one is trust. The companies listed above have to build trust with the individuals who would be sharing data. Building trust takes time, unless you partner with an existing brand that is already trusted. Would you be more willing to use the services of DataCoup, Handshake, OurHDC, or HealthBank if they were associated with Amazon or Samsung? 

The second hurdle relates to privacy, security & governance. Do we have the technology in place to genuinely keep our personal data private & secure in these emerging platforms? Do we have the legislation (both country level & internationally) to fairly govern the sharing, management and trading of these data? There is also the thorny issue of obtaining informed consent. The vulnerable, such as a person with Dementia who may be given a Fitbit to wear, but someone else profits from their activity data being traded? 

Another issue is going to be accuracy, especially with health data that can be generated using wearable technology. Users are manipulating fitness trackers, as reported here. If you're a researcher buying access to aggregated data on Fitbit users, how accurate are the data? How representative will these data be of the general population? 

If we can trade our health data for economic returns, will this commoditization of our health data attract the attention of cybercriminals? 

What about Open Data? Some people argue that these new sources of health data should be donated into a commons, free for researchers to use for the benefit of humanity. 

What does this mean for you? 

Health data brokers - you need to be thinking about these trends, and how you adapt your company's strategy. If you don't, your future revenue streams are likely to suffer (or disappear!)

Healthcare providers & insurers - Are you ready for a world in which patients can choose who they want to share their health data with? 

Patients - Would you feel comfortable trading your health data for economic rewards? 

Pharmaceutical companies - How will this impact how you source data for clinical trials & observational studies? 

Startups - Immense opportunities (and pitfalls) ahead. If personal data marketplaces and patient data co-operatives take off, it could create a brand new industry. 

Policymakers & regulators - The world is definitely moving towards a personal data ecosystem where individuals can own, control and profit from their own data. Legislation needs to consider the rights of everyone involved with such a system. Will their be a special tax for those people who decide to sell their health data? 

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

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Digital Health: Q&A with Ben Gowland

Thanks to social media, it's now possible to engage with leaders in healthcare, in a manner that was not feasible a few years ago. Using Twitter, I recently connected with Ben Gowland @ccginsider, Chief Executive of Nene Clinical Commissioning Group (CCG), which is the organisation responsible for commissioning healthcare for most of Northamptonshire, England. 

Given the recent changes in NHS England, I was curious to hear Ben's perspective on the future of healthcare in England, especially the role that Digital Health may play in that future. It makes for fascinating reading, especially if you're a Digital Health startup! 

BG.JPG

1. Many people are still confused about clinical commissioning in England - could you explain what it means, and how it differs from the prior approach?

There are generally two parts to this question.  The first is understanding what ‘commissioning’ means.  The way the NHS works is that the money to fund healthcare is raised through general taxation, and then this money is distributed to commissioning organisations (like Nene) to buy (or ‘commission’) healthcare services from provider organisations (such as hospitals) for their local area.  So Nene CCG has a budget of £660M to commission healthcare for the population it serves.

Whether commissioning is successful or not is determined by the extent to which commissioning organisations use the money to improve health outcomes and experience.  At its crudest level this means whether people live longer, healthier lives, as a result of the way that the money is used. 

But of course the big challenge facing the NHS, and the majority of healthcare systems, is that in the current economic downturn there is less money available.  Health inflation outstrips any growth in funding and the demand for healthcare services such as accident and emergency attendances and emergency admissions to hospital continue to rise year on year.  Public expectations also rise every year.  So the real challenge facing commissioning organisations like Nene is how do we improve outcomes and experience when there is less money available.

Which brings me to the second part of your question.  Clinical commissioning means that those now responsible for commissioning healthcare are clinical commissioning groups (CCGs).  CCGs are membership organisations of GP practices, so for example Nene has 60 member practices.  These GP practices elect some GPs to be directors of the organisation, who in turn are supported by management directors (like myself) to run the CCG. 

The point of this is that 90% of healthcare contacts happen in primary care.  GPs have always been the ‘gatekeepers’ of the NHS.  As such they are the group best placed to understand the needs of the population, because they see patients every day.  In the past commissioning organisations were essentially management led organisations, and it is this shift to being membership organisations of GP practices that represents the biggest difference from the past.

At the heart of the challenge to improve outcomes and reduce expenditure is the need to reduce the reliance of the healthcare system on acute hospitals.  This requires a bigger focus on prevention, better services in the community and the ability to manage patients with long term conditions outside of hospital.  The challenge for clinical commissioners is to make this a reality, a challenge that previous iterations of commissioning in the NHS have been trying to do for many years without success.

2. How many patients & staff are covered by Nene CCG? 

Nene CCG covers a population of 625,000, and has around 200 staff.  Nene is one of the biggest CCGs in the country.  Some CCGs cover much smaller populations (the smallest covers a population of 70,000) and as a result will have far fewer staff.

3. What are your 3 biggest challenges over the next few years?

The headline challenge for all CCGs is as I have started to outline above: how to improve outcomes and experience in the current financial environment.  Within this there are specific elements that are important, so I have tried to pick 3:

  • How to transform general practice so that it can strengthen its gatekeeper role and partner more effectively with other parts of the health and social care system

  • How to integrate community health and social care services in local communities around the needs of individuals

  • How to change the hospital sector so that it supports the delivery of out of hospital care and provides specialist services as required, rather than acting as the default point of healthcare provision

4. Do you believe Digital Health technologies have a role to play in helping you meet those challenges?

For me the biggest component of all of these challenges is the need to shift the role of individuals within healthcare.  Currently we receive healthcare when we need it.  When we are ill, we transform from citizens to ‘patients’ and let others (health professionals) make decisions about our healthcare.  There are many reasons for this, and a key one is the information imbalance between health professionals and patients.  Technology has a key role in enabling individuals to take control of their health throughout their lives (not just when we need it), as well as becoming partners with health professionals in decision making and treatment when the need arises.

More specifically there are some key information technology challenges impeding progress today.  Effective ‘risk profiling’ populations to identify those at highest risk of admission to hospital so that action can be taken in the community to prevent it is an ongoing challenge.  We are also still struggling to enable information systems between different provider organisations to talk to each other. If we want to commission whole pathways for patients rather than simply commissioning services from individual organisations (which we do) we need joined up information across these pathways.

5. What are your staff & patients asking to be done differently in the future (where technology might help)? 

A key challenge is tackling variation.  It starts with identifying where variation exists, understanding it, and taking action to reduce it.  Variation exists everywhere: between individual clinicians, between GP practices, between hospitals, between the behaviours of different populations.  Alongside this is the systematic implementation of best practice.  It still takes far too long for proven new ways of working to be systematically embedded within the NHS.  If we could do these two things: reduce variation and rapidly implement known best practice we would be in a much better position to manage the current challenges.

We are currently seeing significant growth in the regulation of the NHS.  There is now a chief inspector of hospitals and a chief inspector of general practice, and there are a multitude of organisations with responsibility for different aspects of regulation.  Much of the current demand is to support organisations to be able to meet the requirements of these different regulators.

6. If UK entrepreneurs and innovators want to develop Digital Health technologies that can benefit Nene CCG, what's your advice to them?

New ideas tend to fall over for two reasons.  The first is that they do not look at the financial return on investment.  CCGs have no money, and so can only spend on what will reduce spending overall.  The days of commissioners making decisions on how to invest their growth money have long gone!  The second is ensuring that total cost to the commissioner will be reduced.  New services often stimulate new demand, and so there needs to be clarity that it is existing demand that is being impacted.  So for example it is no good demonstrating that COPD admissions will be reduced for a specific cohort of people with the introduction of a new digital monitoring service if the total number of emergency admissions goes up (whether COPD or otherwise), because the money identified to pay for the new service has gone.  Often new community based or easy access services tap into previously unmet demand, which means that even though they are busy as commissioners we do not see a corresponding decrease in demand elsewhere in the system.

The funding available to the NHS is fixed, and determined by government.  A new technology can provide lots of benefits but key to bear in mind is where the money will come from to fund it. We will always look for a reduction in expenditure elsewhere.  I think partnerships between CCGs and those introducing new technologies on some sort of risk share basis are the most realistic way forward.  Where these are directly offered by providers commissioners are much more likely to be responsive.

Prevention is the biggest area where technologies can help and yet it is one of the areas that is hardest to demonstrate a return on investment. Proving what is not a hospital admission that would have been had it not been for the new technology is very difficult indeed.  One of the key individuals in any area for those wanting to operate in the prevention field is the Director of Public Health.  These posts are now based in local councils (county councils where there are two tier authorities) and having them on side early on will be critical to success.

7. Some technologists, primarily in the USA, believe that the future of healthcare delivery may be the smartphone. Do you think it's realistic that in England in 2018, patients will be performing certain diagnostics on themselves using Digital Health technologies?

If you think about the need to develop individuals as partners in their healthcare rather than simply recipients of it, I think there is a huge role for personal technology like smart phones in enabling this.  In my view the quicker we can get to this the better.  Where now we have some individuals monitoring simple things such as the number of steps they take through a pedometer, empowering individuals means they need to be able to monitor a whole range of diagnostics to monitor their ‘healthiness’ and identify at the earliest possible stage the requirement for intervention. 

There will inevitably be a nervousness and resistance amongst the professions to this.  Many pathologists were resistant to near patient testing when it was introduced and we are talking about something that is a whole stage on from that.  As a result initial demand for this technology is likely to come from individuals themselves wanting to take control of their own health rather than via the professions.  The bigger challenge will then be getting the professions to accept the results as valid!

[Disclosure: Maneesh Juneja has no commercial ties with Nene CCG]

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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. 

bill-of-rights.jpg

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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