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

Shit happens, deal with it.

I'm not a doctor. I'm not a nurse. I'm not a politician. I'm simply a curious individual. When I attend healthcare innovation events, I admit I'm not the smartest person in the room but I am one of the most curious at these events. I'm compelled to mention that the more I learn about the NHS, the more admiration and respect I have for the hard working men and women on the frontline, often working with limited resources and under extreme pressure. 

Paper, X-Rays and a nurse's first day at work

I'm curious about why I had to carry a piece of paper to the X-Ray department when I visited Accident & Emergency (ER room) in a London hospital last year. The triage nurse who saw me, decided an X-Ray of my elbow was required. A piece of paper was printed out, handed to me, and I walked down the hall, handed it into X-Ray, got my X-Ray done, and then walked back down the hall. I then had to knock on the door of the Minor Injuries Unit and 'verbally' let them know my X-Ray had been completed, and then wait outside to be called in. 

So, I patiently waited for hours after my X-Ray had been completed. The same triage nurse walked past and asked me, 'Have you still not been seen?'. Off she went to check, and then within a few minutes, I was called into the Minor Injuries Unit. When I asked the guy looking after me, why it took so long, I was taken aback by the response. My notes were in one tray, and were supposed to be moved to another tray by a nurse once I had 'verbally' let them know my X-Ray was done. The nurse hadn't moved my notes to the other tray. It was her first day, and she wasn't fully up to speed with procedures, I was told. A shrug of his shoulders, and a look on his face that said, 'Shit happens, deal with it'. Maybe we should have 'Open Data' that lets us know on what dates, there are new starters in the hospital? Someone can develop an app using that data that informs us exactly when to avoid the hospital. 

I understand that the NHS is looking to go paperless by 2018, that's still 5 years away. I'm curious why as a consumer, it was so easy for me to have a paperless office, and it was simply a case of buying a Doxie Go, an Eyefi SD card, a LiveScribe Sky pen, and an Evernote account. All bought on Amazon.  

Data driven decisions - Easy for supermarkets, difficult for hospitals?

I'm curious why the NHS isn't using predictive analytics to understand exactly who is most at risk of diabetes, heart disease etc and sending out a personalised series of messages? I worked at DunnHumby (who came up with the idea of the Tesco Clubcard to collect data on shopping habits) in 1997, looking after the data for 8 million customers of Tesco. Even all those years ago, they were able to profile the customers, segment them, and personalise offers for each customer segment. The level of insights from the data means that Tesco now can predict a couple divorcing, 6 months before it actually takes place. Target in the USA can predict when one of their customers is pregnant, all based upon their data. Maybe the NHS could do the same to reduce the rate of teenage pregnancies? [Note: UK has highest teenage pregnancy rates in Western Europe] Let's foster a culture in the NHS of using data to drive decision making and to learn how to optimise the communication strategy to target those people most at risk. 

NHS engaging with startups

Last week I was kindly invited to give a 5 minute talk at the NHS Entrepreneur's Day in London, hosted by Tim Kelsey and Beverly Bryant. We heard from Tim, Beverly and others on their plans for making it easier to do business with the NHS. My talk was about the Health 2.0 London Chapter I started last year, as well as the Health 2.0 Europe conference taking place in London, and what both the Chapter and the Conference can offer to entrepreneurs and SMEs wishing to innovate in the NHS. [Note: If you would like to register for the Health 2.0 Europe conference, you can get a 15% discount off the advertised prices by using promo code of MJ2013. The Chapter is free to join though, and the monthly events are free to attend]

I was seriously impressed that the NHS wishes to make it easier for innovators to engage with them. I'm glad they are building bridges with the innovators. Let's hope those bridges allow two way traffic, have multiple lanes and no speed limits. The event also educated me on the challenges, Tim, Beverly and others face everyday on the inside as they do their best to bring the NHS into the 21st century. I can empathise, having worked in a team looking at transforming Leadership Culture for 11,000 scientists around the world, when I was at GSK. Change within large, complex organisations that are heavily regulated does take time, at least 3 years, and sometimes an entire generation. However, one thing we don't have right now is the luxury of time. Every day that we sit and discuss how to spread innovation within the NHS, patients continue to be at risk. 

Ideas for engaging with startups

Moving forwards, I have 3 ideas for how the NHS could build upon their existing plans to engage with entrepreneurs and startups. 

• A website that lists the current 'wants' by area. Something along the lines of the Open Innovation website from GSK Consumer Healthcare. Imagine being able to search a website to see if your technology is what the NHS is looking for?  

• Reverse hackathons! I'm not impressed by the majority of hackathons I have attended in healthcare. I recently came across a company in the States, called Prebacked. They ran an interesting event in May 2013, where the a US health insurer shared their problems and how much they were willing to pay for technology that solved those problems, and then the hackathon began. 

• Getting more innovators from the private sector inside the NHS. I've been reading about the Presidential Innovation Fellows program that they have started in America. Perhaps NHS Innovation Fellows? I know some very talented people in the UK who could make a real impact on the inside. 

The vision for the NHS in 2078 - where is it? 

The NHS had just celebrated it's 65th birthday. I'm curious how the NHS will look in 65 years time, in the year 2078. I would be 105 years old at that point, if still alive. Whilst I appreciate that there are short term challenges to meet (and lots of initiatives underway already), we also need courageous leaders with a strong vision, who acknowledge that the decisions we make today will have an impact on generations to come. The proposal to create a National Health Service by Aneurin Bevan back in the 1940s was 'radical' at the time, and initially opposed by the BMA. I'm curious what type of health service we want our children and grand children to inherit.

What happens after 2018? 

I believe we are too focused on short term goals in healthcare, be it in the UK or abroad. Be it a politician thinking in 4 year electoral terms, a CEO thinking of their 3 year stock options, or a VC backed startup with their 3 year exit strategy. Not all of our problems in healthcare can be solved in just 3-5 years, and Digital Health, despite it's potential, will alone not be the panacea. Furthermore, 'Innovation' shouldn't just be this year's favourite buzzword to add spice to white papers. Solving problems in healthcare shouldn't just be the remit of senior leaders and entrepreneurs, everyone should be able to participate. Only by putting our differences aside, having candid and authentic conversations with a focus on genuine collaboration, can we even stand a chance of meeting the immense challenges that lie ahead of us.

If this doesn't happen, I'm curious if we will have to get used to a culture of 'Shit happens, deal with it'. 

[Disclosure: I run Health 2.0 London as a volunteer, but I do have commercial ties to Health 2.0 in San Francisco. Apart from this, I have no commercial ties with any of the products/services mentioned in this post] 

39 reasons to buy a Round The World plane ticket

In 2010, I took 6 months off from my job to travel on my own around the world, managing to visit 14 countries (Egypt, Nepal, Cambodia, Vietnam, Thailand, Singapore, Malaysia, China, South Korea, Japan, Australia, New Zealand, USA and Canada. I had planned to include Ecuador, Peru, Argentina and Brazil, but after attending the Burning Man festival, I decided to spend the remainder of my trip in the States. [Note: 3 years later, I'm still digesting the experience of Burning Man, it completely blew my mind. More about that adventure in a future blog post]

Definitely one of the craziest things I have done. Granted, I now have far less 'material wealth' than most of my peers, but I've experienced significant personal (and professional) growth as a result of taking one of the biggest risks of my life. Plus, my bucket list is now a lot shorter! 

Some of my experiences 

Far too many to list in one blog post, but here are a few: 

• Hot air balloon ride at sunrise over Valley of Kings

• Trekking towards Everest Base Camp (had to turn back at 3,440m due to altitude sickness) 

• Sunrise at Ankor Wat

• Taking out money at ATM in Ho Chi Min City and observing the maximum amount available was 2 million in the local currency 

• Arriving in Thailand during the riots, and as a result, stayed in a bungalow right next to the beach for next to nothing as tourists had disappeared

• Riding on the world's first commercial operating Maglev train in Shanghai

• Wandering around Jiuzhaigou Valley [Considered by some to be the prettiest place on Earth] 

• Walking along the Great Wall of China

• Local people asking to have their picture taken with me [This was happening every day in China, no matter where I went. I believe it's because I'm brown, tall, and relatively hairy. Many Chinese had never met someone who looked like me, I was a novelty] 

• Visiting the most heavily militarized border in the world and having a bottle of North Korean beer 

• Staying in a tropical fruit farm in the oldest surviving rainforest in the world 

• Meeting Aborigines, Maoris and native Hawaiians and learning about their history and culture

• Driving from San Diego to Vancouver along the Pacific Coast Highway in a Ford Mustang convertible (and using AirBnB for accomodation)

• The Grand Circle tour, including a full moon tour of Monument Valley

• Spontaneously renting a Cessna 172 plane and pilot to take pictures of Garibaldi Provincial Park from 10,000 ft  

• Tried weird and wonderful meats along the way such as Crocodile, Kangaroo, Ostrich, Bison, Shark, and Sea Snake (was offered Dog and Cat burgers in Beijing night market, but refused)

What was it like? 

Every day was an adventure. At that point in my life, I'd already visited over 25 countries, so I wasn't afraid of new places and new people. I remember meeting someone in Japan who told me that simply contemplating the idea of travelling to so many countries, and needing different currencies made her very anxious. I didn't really plan much apart from knowing that I had certain stopovers along the way. Most of the 6 months was quite spontaneous. For example, I was flying from Siem Reap to Bangkok, without any idea of where to stay or visit. Sitting next to me was an American guy married to a Thai lady. We got chatting, and they recommended flying to Krabi from Bangkok and staying in Railay West, as that was their tip as locals. So, I did that, and had a brilliant adventure there. I got many of my tips on where to stay or what to see from local people. What was surprising was how many other travellers you meet along the way, and how helpful people in general can be. The world is considerably less dangerous than you've been led to believe [especially if you pay attention to mainstream media such as Fox News]

What did I learn?  

I learnt to express gratitude for everything that I have been given in life. That humanity can exist in the most unexpected of places and there is more that unites us than divides us. Only by working together can we improve the lives of 7 billion people. 

It made me realise that the 3 biggest challenges our world faces are water, energy and food security. I was able to witness changes in certain Emerging Markets with my own eyes, particularly visiting 8 different cities in China. Most of my peers in the West still don't realise the profound economic and cultural changes going on places like China. In all my life, I've never witnessed the pace of change that I experienced in my trip to China. 

In my opinion, the 21st century will not be a unipolar world with the USA standing alone as a superpower, I believe it will be a multipolar world, with more voices at the table. I've always been curious about the world, but this trip really pushed me to think globally every moment of every day.

Self-reliance is one of the biggest skills I developed. It's 2am in Cairo, I was looking for a taxi, and when I found one, I had to persuade the driver to take me, and if he agreed, to then barter for the fare as he won't use the meter. He spoke almost no English, and I just knew how to say 'Thank You' in Arabic. I pulled out my phrasebook, but there were no streetlights, so I was bartering with the driver, from the front of the car, using the light from his headlamps so I could read from my phrasebook. One also learns to trust one's gut instinct, because in that moment, the only person you can rely on is yourself. 

Oh, I packed lots of stuff that I might have needed into one backpack. I estimate I used probably 20% of the items (including clothes). You'd be surprised what you can pick up in local markets along the journey. I'd definitely take less next time. 

What next? 

Well, since that trip, I've also managed to visit Finland, to visit the Arctic Circle to witness the Midnight Sun (A period where the sun never sets, i.e. 24 hours of daylight) and Russia to attend the White Nights Festival in St. Petersburg, and pop over to Moscow too.

So, 44 countries now.

I read about the Travelers Century Club which admits people who have visited 100 countries, so my goal is to visit another 56 countries over the next 10 years. Alternatively, another RTW trip with just a toothbrush? Rolf Potts travels round the world with no luggage! 

I leave you with two quotes that have inspired me to change how I live my life. 

'Money comes and goes, but time only goes' 

'Don't be possessed by your possessions'  

There are 39 pictures in the slideshow below which show some of the highlights from my trip. Hover over the images, and the description will appear. I hope this post inspires you to pursue your own travel adventures. 

The Temple of Kom Ombo (Egypt)

Sunrise hot air balloon ride over Valley of the Kings (Eygpt)

A police man gazes at the Great Pyramid. (Giza, Eygpt)

The view of Mount Everest at 11,286 ft (Namche Bazaar, Nepal)

Buddhist Stupa en route to Everest Base Camp (Nepal)

Sunrise view of the Annapurna range (Nepal)

Monks have their own waiting rooms (Bangkok Airport, Thailand)

Sunset at Railay West Beach (Thailand)

A girl volunteers to be part of the "Birds of Prey" show in Jurong Bird Park (Singapore)

The Kek Lok Si Temple (Penang, Malaysia)

The Petronas Twin Towers (Kuala Lumpur, Malaysia)

Kek Lok Si temple - The 30.2m bronze statue of Goddess of Mercy (Penang, Malaysia)

Daily Mass at Cao Dai temple (Vietnam)

Ho Chi Minh mausoleum (Hanoi, Vietnam)

This tradition is over 1,000 years old (Ho Chi Minh City, Vietnam)

Royal Palace (Phnom Penh, Cambodia)

Sunrise at entrance to Angkor Wat (Cambodia)

Faces of Bayon (Angkor Wat, Cambodia)

Nan Lian Garden (Hong Kong)

Pit 1, Terracotta Warriors (Xian, China)

Panda Breeding Research Center (Chengdu, China)

A couple have their wedding photos taken (Jiuzhaigou National Park, China)

Starbucks in Houhai district (Beijing, China)

Royal Guard changing ceremony at Gyeongbokgung Palace (Seoul, South Korea)

North Korean "Taedonggang" beer, only sold at the border (Demilitarised Zone, South Korea)

The largest store in the whole world (Busan, South Korea)

A rare glimpse of Mt Fuji summit in summer (Japan)

Beware of 6ft tall Cassowaries "The most dangerous bird in the world" (Queensland, Australia)

Had to remember not to go near the water (Queensland, Australia)

View underneath the Harbour Bridge (Sydney, Australia)

The amazing peaks of the Southern Alps (New Zealand)

Hiking up the Franz-Josef glacier (New Zealand)

Maori performance at Mitai Village (Rotorua, New Zealand)

The view of the Grand Staircase (Utah, USA)

Sunrise view of Mitten Buttes in Monument Valley (Utah/Arizona, USA)

The MAN @ Burning Man Festival (Black Rock City, USA)

Sunrise at Waikiki Beach (Honolulu, Hawaii)

The Alpine scenery of Garibaldi Provincial Park (Canada)

"Fall" at the Japanese Sunken Garden (Butchart Gardens, Canada)

I'm a geek, not a terrorist

So, I was travelling by 'tube' in London yesterday (subway for my American readers), and I was wearing a biosensor strapped to my forehead.  If you've been to London, you'll know that people shy away from making eye contact on the tube. As the doors to the carriage were closing, I heard the announcement over the PA system, something about 'report any signs of suspicious behaviour'.

It's then that I became aware that other passengers were looking at me with a mix of curiosity, apprehension and bewilderment. Now, for those in the Digital Health arena that know me well, me walking around with some kind of gadget strapped to my head is 'normal'. I certainly don't even think twice about it.

Wearing my Truesense biosensor

Wearing my Neurosky Mindwave headset

Fear of the Unknown

Maybe I need to do what photographers did a few years back and wear a t-shirt that says 'I'm a GEEK, not a terrorist"? Or should I be wearing my biosensor under a headband?

Misuse of 'wearable computing'?

In the future, what if technology such as Google Glass is 'misused' by someone who wishes to harm society? Will it cause the public to be suspicious of wearable computing? Will it lead to a knee jerk reaction from governments and legislators? What if manufacturers design products that integrate with how we currently dress?

Yesterday, I was also wearing a MeCam.

Taken with a pen to show you just how small the MeCam is

It was switched on, I simply wanted to see if anyone noticed that I was wearing a video camera capable of recording 2 hours of HD video. Not one person I met realised what it was. One person thought it was something to do with my headphones. They were surprised when I told them what it was. [Note: I deleted any footage I captured in this experiment]

How will society respond? 

Now I'm thinking, as these technologies become cheaper and potentially integrated into our everyday clothing, how will we know who is wearing a jacket that contains a wearable computer and who doesn't?

If someone is wearing a sensor that is monitoring their own body, could that sensor also monitor other people's bodies without their consent? Who owns that data? Do we get the chance to practice 'informed consent'? [Note: A video also counts as data] 

From a moral standpoint, should I be walking around with a note on my shirt saying, "Warning: You are being recorded on video"? 

However, it got me thinking, how do others (who are not in the Digital Health arena) perceive me?

It was a hot and humid day, a brown skinned man walks into the carriage, with what looks like a microchip on his forehead, and he's perspiring heavily [Note: the 'tube' in London has no air conditioning]. Would people stop to ask me, so "Recording your EEG brain waves again are you, mate?" or would they assume it's some kind of trigger for an explosive device, and possibly report me to the authorities as a potential terrorist?

Reflecting on the wider issue here, with the rise of wearable computing (not just in Digital Health), how will the general public perceive early adopters who are wearing all sorts of gadgets, sensors and devices? 

What are the implications for our security and privacy? 

[Disclosure: The author has no financial relationships with any of the companies mentioned in this blog post.] Thanks to Pritpal S Tamber for taking the picture of me and for taking part in my experiment. 

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.

An evening with Robert Scoble

This week, I attended an event hosted by RackSpace in London, with a keynote by Robert Scoble, entitled 'The Age of Context'. I was curious to hear 'his vision of the (very) near future, where context is being redefined in an increasingly connected world through a series of inter-related trends'.

Robert Scoble promises to never live a day without wearing Google Glass (or it's competitor)

As you can see from the picture, and his two week review back in April 2013, he's definitely an early adopter! Interestingly enough, he's wearing Google Glass on top of his prescription glasses. 

Most of the technology discussed and demonstrated, including Google Glass, I had already seen at FutureMed in February (and also met the people behind the technology). 

These are some of the quotes from Robert's keynote that caught my attention.  

1. 'The databases we had yesterday are not suitable for the data flows of tomorrow. More data about our world, and more data about US in that world'

2. 'A very personalised world. General Motors considering putting 3D sensors in their cars, so they know who is sitting in the seat' 

3. 'A highly anticipatory world. Google Now is a great example. When I walk into an airport, my airline ticket comes up on Google Glass and my phone.'

4. 'In 5 years time, businesses will know a lot more detail about you'.  

Data is becoming even more valuable

Since my background is data, the first thing I notice about the future we are heading towards, is that it's powered by data. The data we provide by checking in to Foursquare or data that are captured when you use Gmail to send an email, and so on. The younger we are, the more likely we are to be sharing our personal data with corporations through the use of new technologies. The more searches we do on Google, and the more people on Earth that use Google to conduct searches, the better they can predict our next step. This personalised and anticipatory world that we are hearing more about, is powered by OUR data. As individuals, do we even realise the VALUE of our personal data? 

Can it improve healthcare?

Since I work in Digital Health, I already see how wearable computers such as Google Glass could be of great benefit in healthcare. Imagine a 75 year old person who has just been diagnosed with Alzheimer's. Imagine they say 'OK Glass. Remind me to take my medication at 10am every day'.

Imagine a child with Down's Syndrome, who if they get lost and can't find their way home, can simply say 'OK Glass. Navigate to Home'.  

Do we need to regulate 'Wearable Computing'?

Reflecting upon Robert's keynote, I'm even more convinced that wearable computing is here to stay. However, as sensors will continue to get smaller over time, I see 'unobtrusive monitoring' as one of the stages of this new path in technology.

In the future, what if biosensors were so small, they could be inserted into your internal organs?  What if a biosensor in your liver, streamed data to the cloud via your smartphone in real-time?

If you were in the bar having a night out with your friends, would you be angry if the bartender told you 'I'm not allowed to serve you any more alcohol', because the data from your liver indicated you had crossed the limits of alcohol consumption that you'd agreed with your doctor?

I was doing some research into fear of new technology, and found this superb article 'A futurist explains how society moves from fear to acceptance of smartphones, computers, and other advances'. 

Naturally, we in society, must always take a reasoned approach to evaluating new technologies. Do the benefits outweigh the risks? 

Where is the Silicon Valley of Digital Health?

​Jim Joyce introducing the panel discussion: Where is the Silicon Valley of Digital Health?

This was a question posed to a panel of healthcare innovators at the Health XL Global Gathering in Dublin yesterday. (I am a mentor in the Health XL program, which is why I attended). ​

Outside of the presentations by the 7 teams that had been through the program, this question and the discussion that followed really made me think about the future. ​

Naturally, when it comes to tech and launching your startup, Silicon Valley has been the place to be for decades. However, when it comes to Digital Health, could the Silicon Valley be somewhere else? At Health XL, we heard from ClaimSync (Ghana), NurseBuddy (Finland), Sense of Skin (Ireland), GoAct (Australia), Evinance (Canada), Nutritics (Ireland), myMedScore (USA). That's right, 6 out of the 7 startups were from OUTSIDE the USA. 

All 7 Health XL teams on stage at the event

After listening to a passionate presentation by ClaimSync from Ghana, I'm starting to think that Africa may well be one of the places that will lead the world in Digital Health during the 21st century. ​

In addition, we heard from Ashifi Gogo, CEO of Sproxil who spoke on Digital Health in Emerging Markets. ​

At the inaugral DEMO-Africa conference in October 2012, one attendee said "Mobile is changing Africa, and Africa is going to change mobile​". The link takes you an article that features a 20 minute video from DEMO-Africa, which I highly recommend viewing. 

Then there is the Konza Techno city project in Kenya which aims to serve as a world-class IT hub with the goal of creating 100,000 jobs by 2030. Controversially, some have branded Nairobi, Kenya as "Silicon Savannah". 

​Not to be outdone, Ghana's "Hope City" aims to create jobs for 50,000 people.

​Innovation from unexpected places

The world is changing, from a unipolar world, to a multipolar world. I've seen that with my own eyes as I took a 6 month round the world trip in 2010 (Something I highly recommend to expand your horizons). An example of this, is that my cousin who lives in Kolkata, India got got access to 4G mobile technology BEFORE London, where I live. When we think about places like Kolkata, we normally think of Mother Teresa, slums and poverty. In the 21st century, the pace of innovation and adoption of new technologies in places like Kolkata is often much faster than London, Berlin or Palo Alto.

Importing innovation from developing nations?

Furthermore, the Digital Health solutions being developed in the developing world, are more likely to be 'sustainable', since the innovation has been born out of necessity. A few wise healthcare leaders in the US and Europe have already recognised that many technological solutions to our problems in healthcare will have to be imported from poorer countries. This strikes me as a superb opportunity for entrepreneurs living in those countries. It's also throws up opportunities for investors and corporations who are looking for the next big thing.

Startups no longer for the privileged few

The rise in crowdfunding sites like Kickstarter and Indiegogo illustrate the democratization of raising funds for your startup. If you have an idea, and are on the internet, you can tap into the personal resources and networks of 7 billion people. ​At the risk of using a cliche, that is a game changer. The barriers to launching a startup have decreased considerably over the years. I hear many people at Healthcare Innovation events proclaiming, "It's never been a better time to be an entrepreneur in Healthcare". I wholeheartedly agree. 

If you're interested in understanding the future of Digital Health in the 21st century, it almost seems like a no-brainer to explore the startup scene in Africa. Who knows, perhaps we will bump into each other at ​Demo-Africa 2013? (I've never been to Africa, and this event seems a great reason to head out there).

Is Dementia not as 'sexy' as other problems?

Today is the last day of Dementia Awareness week in the UK. Last Wednesday, I hosted a free Health 2.0 London event 'Can the tech community help to prevent the Dementia crisis?'. The event was promoted on social media, had passionate people giving illuminating talks, including 5 startups, and was sponsored by O2 Health and Telefonica. Over 40 people attended, but I was surprised that we didn't have more attendees. 

​Sarah Reed gave a brilliant talk at Health 2.0 London on the challenges for patients (and their families and doctors) who live with Dementia.

On Friday, I was at the USEFIL workshop on technology for independent living at the Institute of Digital Healthcare. A fascinating event (and free to attend), with some very interesting ideas on how technology could help Dementia patients (and their families). Again, I was surprised that the auditorium was not packed out.​

​Dr Tom Berber spoke on the accelerometery signatures of acute medical events when monitoring elderly patients

Yesterday, I attended the first few hours of the ​NHS Hack Day. The energy was superb, and I listened to doctors, patients, developers 'pitching' their ideas. It was my first NHS Hack Day, and it was encouraging to see the creativity of the ideas. However, I don't recall anyone pitching an idea that was directly for Dementia patients, caregivers or their families. 

​Amazing energy at NHS Hack Day

The scale of problem in the 21st century

A recent study showed that Dementia and Alzheimer’s disease have risen from the 24th leading cause of death in the UK to the 10th in the last 20 years. More than half of the estimated 670,000 people living with condition in the UK have not been diagnosed. Almost half of UK adults would find it difficult to tell their own family if they thought they had dementia according to a poll.

Globally, the number of people living with Dementia is forecast to triple by 2050, from around 35 million today to over 115 million, and 70% will be living in low and middle income countries. In the USA, total payments for health care, long-term care and hospice for people with Alzheimer's and other dementias are projected to increase from $203 billion in 2013 to $1.2 trillion in 2050 (in current dollars). 

If nothing is done, Alzheimer’s will become the “financial sinkhole of the 21st century,” says gerontologist Ken Dychtwald

Surely, someone must be doing something?

Yes, we have the Cleverminds app for Alzheimer's that was recently funded on Kickstarter. Acuity Design have been using NFC technology to develop Tapcare solutions that could be used by Dementia patients. So, the Digital Health community are not ignoring Dementia completely. 

However, given the scale of the problem that we face in the UK and beyond, I'm curious to know why the Digital Health community is not doing more?

1. Is it because Dementia is not as 'sexy' as other problems, like cancer and obesity?

2. Is it because investors shy away from backing startups aimed at helping Dementia patients?

3. It it because health care and social care are often not integrated at national level by policy makers?

4. Is it because we are not talking enough about Dementia?

I'd be interested to hear your thoughts.

The future

It's brilliant to hear that a specific G8 Dementia summit will be held in London in just a few months time. I really hope that this gathering of world leaders will draw attention to one of the biggest challenges we face in the 21st century.

Just in the UK, it's estimated that over 600,000 unpaid carers are primary carers for Dementia patients, and two thirds of Dementia patients live at home. Despite the fact that currently we have no treatment for Dementia and no way to halt progression of the disease, I believe there is much more we could be doing with technology to help Dementia patients (and the relatives and friends who sacrifice so much to care for them). 

If you're in the Digital Health community, and want to make a REALLY BIG impact on the lives of people,  I have only one thing to say, "Wake Up - the world needs YOU!"​

How 'Silicon Valley Comes to the UK' changed my life

On Saturday 13th April 2013, I gave my first TEDx talk. It's an honour and a privilege to have been invited to give the talk at TEDx O'Porto in Portugal. I shared my ideas on Citizen Science, and how health data could be used to improve the health of everyone on the planet. Well, TED does encourage speakers to think BIG!

So, how did I get to this point, when this time 12 months ago, I was an employee for one of the largest pharmaceutical companies in the world, GlaxoSmithKline?

The road began when I attended Silicon Valley comes to the UK on Friday 18th November 2011 at Cambridge University (This blog post is published exactly 18 months from that very day). I went along out of curiosity having never visited Silicon Valley before. The entire day was filled with talks by leaders from Silicon Valley. People such as Reid Hoffman, Megan Smith, Julie Hanna, DJ Patil, Nancy Lublin and Andrew McLaughlin. They were challenging people in the UK (particularly students) to become more entrepreneurial and to take risks. They shared their stories in each talk, and for me, the biggest take home message from the day was 'Don't be afraid to fail'. It was the complete opposite of working in the pharmaceutical industry, where the culture is much more risk averse than other sectors. I had the chance to meet with many of the speakers, and when I shared my dream of making an impact on global health from patient data, each of them encouraged me to follow my dreams. Andrew McLaughlin was the one person who had the most influence on my thinking on patient data, and it was that 10 minute conversation which was my tipping point. 

When I returned to work, I desired more freedom to pursue my own ideas. However, that mindset clashes with the tasks one is given when working for a large and complex organisation.

I realised over the next month that the freedom I desired would only arrive once I was working for myself. I made the decision and resigned. I worked on amazing projects at GSK with some very intelligent people that impacted patients around the world, but I craved complete autonomy. Not everyone can quit their job, but my circumstances allowed me to do that. If I need to live 'lean' for a while, I don't have a problem making sacrifices. I’ve quit a job before. Back in late 1999, I left DunnHumby, to see if I could survive by day trading on the UK stock market. It was the height of the dot-com boom. I managed to make significantly more than my previous salary for the next 6 months. However, two things led me to go back into full time employment.

Social isolation and the crash of early 2000. I was making my profit for the day by lunchtime, but when I contacted my friends, they were all busy working. I felt socially isolated, as I’ve always worked in collaborative environments. On top of that, I got caught in the bubble of the tech boom, and believed the stock market would keep rising, even after the crash had begun. I had made enough profit over the 6 months to buy a Ferrari, but I lost 95% of that profit in the months after the crash, as prices collapsed and never recovered.

So back to early 2012, working my notice period at GSK. People asked me, what are you going to do next? What’s your plan? I didn’t have a plan, all I knew was I wanted to create the space in my life for something new to come in. I gave myself a year. I also wasn’t attached to the outcome of my decision. If I succeeded, great. If I failed, I could always find a work again, either permanent or contract. Given the economic climate in the UK, everyone thought I was insane for walking towards the unknown.

I was very curious to see what was happening in healthcare, so I jumped on a plane to Delhi, India for a weekend. It was the first Health 2.0 India conference. I’d never heard of Health 2.0 before. It was enlightening. The energy was superb, there was a hackathon going on simultaneously in the room next door. It blew all my perceptions of startups in India away (and I've been to India over 20 times). I asked Matthew Holt, one of the founders, what they were doing in London. He said zilch but suggested I could start the Health 2.0 London Chapter. I did start it, and had 10 people sitting in a pub in London at my first event in April 2012!

The next month, I decided to head to Silicon Valley to expose myself to the culture I’d heard about a few months back. I registered for an interesting conference, Wisdom 2.0.

​Closing ceremony - Wisdom 2.0 2012 at Google, Mountainview, CA

It was a spiritual earthquake for me. It was the only group of people that congratulated me on quitting my job to follow my own dreams. In fact, I met many others, who shared their own stories of leaving corporate life to change the world! Part of the conference was in the Googleplex in Mountainview. It’s a cliché, but those 4 days changed my life. It was Trevor Colemen of Interaxon who was there, and inspired me to start using Twitter by taking the time to demonstrate how it works. My feedback at the conference was even featured in a 2 minute video.

Whilst I was there, a number of people heard my story and told me I must attend the TEDActive conference. I’d never imagined I would attend a TED conference. The clincher for me was reading this blog by JD Schramm. I applied at the last minute, and on the 2nd day of Wisdom 2.0, my application for TEDActive was approved!

If I felt like a 5 year old seeing the world with new eyes at Wisdom 2.0, then I felt like a newborn baby at TEDActive. I was shocked and left in awe at this convergence of minds, and the desire to help each other. People there encouraged me to think BIG, so I left the conference knowing my life purpose. I wanted to start a data driven revolution in global health. I shall always  remember sitting on a bean bag with 600 people, watching the closing statement from Chris Anderson, who simply said “Be Curious”.

​With Rives and Kelly - the hosts of TEDActive 2012

The final night at TEDActive was a party at the new venue where the 2013 conference would be held. Live music courtesy of Las Cafeteras, and I celebrated with my new friends. Ironically, a picture of the party, which included me, made it to the TED website!

So then I returned back to work in London, the contrast between the world I’d been in, with the world I just caught a glimpse of was staggering. There was no turning back on my path.

I still had a few months to work during my notice period. During that time, I was even more curious. So I attended, The Next Web conference and the Global Health and Innovation conference. The more events I went to, the more I expanded my mind. The more people I met, the more my thinking was challenged, and I experienced significant personal growth.

Great talk by Andrew Keil at The Next Web 2012 about how big companies are broken

Fast forward to June 2012, when I’d left GSK, and was in the outside world, with just my dream! The first few months were both terrifying and exciting. My brain used to hurt every day, as it was a new experience to think for myself, every moment of every day. I still didn’t have a plan or a specific idea, but I had the space I desired.

I didn’t have much space for long, I was approached by someone who heard I had left, and asked if I could do some work for them. I’ve spent 18 years analyzing data, so had technical skills that are were in demand. I then had to register a company, get an accountant, finalise a contract, determine how much to charge for my skills. So, MJ Analytics Ltd was born.

Shortly after that I was invited to give a talk at an innovation retreat for a multinational corporation. They paid me to share the story of my career, my journey that led to me quitting GSK, and to inspire those employees who wish to innovate within the framework of a large complex organization.

In my spare time, I was being bolder and braver with the Health 2.0 London Chapter meetings. Knowing full well from my experience in GSK that there was a need to foster a culture of collaboration within the UK health innovation ecosystem, I reached out to different organisations. The turning point was September 2012, when Health 2.0 London hosted an event “How can mHealth transform healthcare?”. Google Campus in London gave us a room at no charge, a health startup sponsored the drinks. We had speakers from NHS Choices, Golden Gekko, and 3 UK health startups. One startup, Sleepio is now in the NHS Apps Library and one of the 10 apps partnered with Jawbone UP, and another, uMotif is running a trial with their app for Parkinson's patients.

12 months after our first event, we now have a group of 370+ members, including members of the pharmaceutical industry, NHS Choices, MHRA, UCL, Imperial College London, London Business School, doctors, designers, startups and more! We’ve run events on clinical trials, care homes, privacy and security of patient data, and social media.

So, I continued to stay curious, and to develop my understanding of how technology could be used in global health. I attended Health 2.0 San Francisco, Strata Rx, Body Computing 2012, Open Science Summit, ​Singularity Summit, Health 2.0 Europe, mHealth Summit, Health 2.0 Middle East, FutureMed, NHS Expo and TEDx Nijmegen.

An honour to meet Dr Dave Albert, inventor of AliveCor at USC Body Computing 2012

'A villager in India should have the same access to scientific output as Professor at Harvard' - Richard Price, Founder of Academia.edu at Open Science Summit 2012

​I led a 'Birds of a Feather' session on integrating existing and new streams of health data - Strata Rx 2012

100 years ago, it was morse code,now we have 4G. Not even world wars have stopped the progress - Ray Kurzweil, Singularity Summit 2012

The future of health informatics is open, deep and blue - Peter Levin at Health 2.0 Europe 2012

Catching up with Matthew Holt, co-founder of the Health 2.0 Conference - ​at mHealth Summit 2012

Altibbi is the WebMD of the Middle East - Health 2.0 Middle East 2013

FutureMed was a 6 day program on exponential technologies in healthcare and medicine. It was run by Singularity University, and held at NASA Ames Research Center in Silicon Valley. I was one of only two people from the UK there. Being taught by astronauts who had been on the space shuttle. A glimpse into the future technologies being developed. 3D printing of human organs, algorithms that can help a doctor make an accurate diagnosis, and so much more. Discussions with students from around the world on the future of healthcare, which often lasted till the early hours of the morning. Now I know why it’s nickname is ‘Sleepless University’.

All students and staff in scrubs at FutureMed 2013 ​at Singularity University (I'm top right hand corner wearing shades!)

During this time, my ideas on patient data were being influenced by so many people that I met at these events and at my Health 2.0 London events. My vision became clearer and clearer as time went by, and I understood what I wanted to achieve within my lifetime.

I was invited to share my vision at the Real World Data Summit in March 2013. Attendees were from the pharmaceutical industry. Further validation that I must not be afraid to think big, and think what’s needed for healthcare in the 21st century.

So, you are wondering how I got invited to give a TEDx talk? When I attended TEDActive, each delegate fills in their profile on the TED website. Before you attend the conference, they run an algorithm which determined which of the 600 delegates are your top 10 to meet, based upon your profile matching with their profile. The conference had finished and still hadn’t met my no.1 match! A group of TEDActivators went to Palm Springs Aerial Tramway. When I was there, I met Norberto Amaral. He was my no.1 match, and it turned out I was his no.1 match! We didn’t have much time to talk, but connected on Facebook once we got home.​

Norberto is the organiser of TEDx O’Porto, and one night, we were chatting on Facebook, and I was giving him an update on what I was trying to do with my ideas on using health data. He then invited me to give a talk at the next TEDx O’Porto event. I accepted immediately!

​At dinner with Norberto Amaral after TEDx O'Porto 2013

It’s an honour and a privilege to have this opportunity. I look back at the events of the last 18 months, and everything that has occurred is beyond my wildest dreams. I’m now a big fan of the Silicon Valley mindset, realising that adopting an attitude of ‘’not being afraid of failure” has taken me to heights I never imagined possible. However, I also acknowledge that the critical success factor for me has been the constant encouragement and support from friends, family and inspiring people that I’ve met around the world at these conferences. I don’t know if I will succeed in my mission to find ways of using data to improve the health of everyone on the planet, but I’m determined to try my best. I hope my first blog post has inspired you to follow your own dreams in life. It would be great to hear your thoughts and experiences. 

On stage at TEDx O'Porto 2013