The paradox of privacy

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When you're driving the car, would you let an employee from a corporation sit in the passenger seat and record details on what route you're taking, which music you listen to and the text messages you send and receive? 

When you're sitting at home watching TV with your family, would you let an employee from a corporation sit on the sofa next to you and record details on what types of TV shows you watch? 

When you're in the gym working out, when you're going for your daily walk, would you let an employee from a corporation stand alongside you and record details on how long you walked, where you walked, and how your body responded to the physical activity? 

I suspect many of you would answer 'No' to all 3 questions. However, that's exactly the future that is being painted after the recent Google I/O event. Aimed at software developers, it revealed a glimpse of what Google have got planned for the year ahead. New services such as Android Wear, Android Auto, Android TV and Google Fit promise to change our lives. 

In this article titled 'Google's master plan: Turn everything into data!", David Auerbach appreciates how more sensors in our homes, cities and on our bodies is a hugely lucrative opportunity for a company like Google. "That information is also useful to companies that want to sell you things. And if Google stands between your data and the sellers and controls the pipe, then life is sweet for Google."

In a brilliant article by Parmy Olsen, she writes about the announcement at I/O about Google Fit, a new platform. "There’s a major advertising opportunity for Google to aggregate our health data in a realm outside of traditional search". Now during the event, Google did state that users would control what health and fitness data they share with the platform. Let's see whether corporate statements translate to actual terms & conditions in the years ahead. 

Do we even realise how much personal data are stored on our phones?

Do we even realise how much personal data are stored on our phones?

Why are companies like Google so interested in the data from your body in between doctor visits? As I've stated before, our bodies generate data 24/7, yet it's only currently captured when we visit the doctor. So, the organisation that captures, stores & aggregates that data at a global level is likely to be very profitable, as well as wielding significant power in health & social care. 

Indeed, it could also prove transformative for those providing & delivering health & social care. In the utopian vision of health systems powered by data, this constant stream of data about our health might allow the system to predict when we're likely to have a heart attack, or fall? 

Privacy and your baby

When people have a baby, some things change. It's human nature to want to protect and provide for our children when they are helpless and vulnerable. For example, someone may decide to upgrade to a safer car once they have a baby. We generally do everything we can to give our children the best possible start in life.

If you have a newborn baby, would you allow an employee from a corporation to enter your home and sit next to your baby and record data on it's sleeping patterns? In the emerging world of wearable technology, some parents are considering using products and services where their baby's data would be owned by someone else. 

Sproutling is a smart baby monitor, shipping in March 2015, but taking pre-orders now. It attaches to your baby's ankle, and measures heart rate and movement and interprets mood. It promises to learn and predict your baby's sleep habits. You've got an activity and sleep tracker for yourself, why not one for your baby, right? According to their website today, 31% of their monitors have been sold. The privacy policy on their website is commendably short, but not explicit enough in my opinion. So I went on Twitter to quiz Sproutling about who exactly owns the data collected from the baby using the device. As you can see, they referred me back to their privacy policy, and didn't really answer my question. 

The paradox

What's fascinating is how we say one thing and do another. A survey of 4,000 consumers in the UK, US and Australia found that 62% are worried about their personal data being used for marketing. Yet, 65% of respondents rarely or never read the privacy policy on a website before making a purchase. 

In a survey by Accenture Interactive, they found that 80% of people have privacy concerns with wearable Internet of Things connected technologies. Only 9% of those in the survey said they would share their data with brands for free. Yet, that figure rose to 28% would share their wearable data if they were given a coupon or discount based upon their lifestyle. 

Ideally, there would be a way in which we as consumers could own and control our personal data in the cloud and even profit from it. In fact, it already exists. The Respect Network promises just that, and was launched globally at the end of June 2014. From their website, "Respect Network enables secure, authentic and trusted relationships in the digital world". Surely, that's what we want in the 21st century? Or maybe not. I haven't met a single person who has heard of Respect Network since they launched. Not one person. What does that tell you about the world we live in?

Deep down, are we increasingly becoming apathetic about privacy? Is convenience a higher priority than knowing that our personal data are safe? Is being safe and secure in the digital world just a big hassle?

A survey of 15,000 consumers in 15 countries for the EMC Privacy Index found a number of behavioural paradoxes, one of which they termed "Take no action", "although privacy risks directly impact many consumers, most take virtually no action to protect their privacy – instead placing the onus on government and businesses". It reminds me of an interaction I had on Twitter recently with Dr Gulati, an investor in Digital Health. 

What needs to change?

Our children are growing up in a world where their personal data are going to be increasingly useful (or harmful), depending upon the context. What are our children taught at school about their personal data rights? It's been recently suggested that schools in England should offer lessons about sex and relationships from age 7, part of a "curriculum for life". Shouldn't the curriculum for life include being educated about the intersection of your personal data and your privacy?

We are moving towards a more connected world, whether we like it or not. Personally, I'm not averse to corporations and governments collecting data about us and our behaviour, as long as we are able to make informed choices. I like how in this article about the Internet of Things and privacy, Marc Loewenthal writes "discussions about the data created are far more likely to focus on how to use the data rather than how to protect it". Loewenthal also goes on to mention how the traditional forms of delivering privacy guidelines to consumers aren't fit for purpose in an increasingly connected world, "They typically ignore the privacy notices or terms of use, and the mechanisms for delivering the notices are often awkward, inconvenient, and unclear".

When was the last time you read through (and fully understood) the terms and conditions and privacy policy of a health app or piece of wearable technology? So many more connected devices, each with their own privacy policy and terms and conditions. Not something I look forward to as a consumer. The existing approach isn't effective, we need to think differently about how we can truly enable people to be able make informed choices in the 21st century.

Now, what if each of us  had our OWN terms and conditions and privacy policy and then we could see if the health app meets OUR criteria? We, as consumers, decide in advance what we want to share, with whom, and what we expect in return. How would that even work? Surely, we'd need to cluster similar needs together to perhaps form 5 standard privacy profiles? Imagine comparing three different health apps which do they same thing, but you can see instantly that only one of them has the privacy profile that meets your needs? Or even when browsing through the app store, you choose to only be shown those apps that match your privacy profile? That would definitely make it easier for each of us to be able to make an informed choice. 

Things are changing as it was revealed last night that Apple have tightened privacy rules in their new operating system for people developing apps using their new HealthKit API. An article cites text pulled from the licence, developers may "not sell an end-user's health information collected through the HealthKit API to advertising platforms, data brokers or information resellers," and are barred from using gathered data "for any purpose other than providing health and/or fitness services."

Apps using the HealthKit API must also provide privacy policies.

This news is definitely a big step forward for anyone who cares about the privacy of their health data. Although the guaranteed link to a privacy policy doesn't necessarily mean it will be easy to understand for consumers. I also wonder how companies that develop health apps using the HealthKit API will make money, given current business models are based around the collection and use of data. 

Will the news from Apple make you more likely as a consumer to download a health app for your iPhone vs your Android device? Will it cause you trust Apple more than Google or Samsung? Have Apple gone far enough with their recent announcement or could they do more? Will Apple's stance lead to them becoming THE trusted hub for our health data, above and beyond the current healthcare system?

How can we as individuals do more to become aware of our rights? As well as the campaigns to teach people to learn how to code, should we have campaigns to teach people how to protect their privacy? When commentators write that privacy is dead, do you believe them?

We're heading towards a future where over the next decade it will become far easier to use sensors to monitor the state of our bodies. Would you prefer a future where my body=my data or my body=their data? The choice is yours.

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

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Will Android Wear impact health & social care?

Android Wear was shown on stage at Google I/O in June 2014. What is it? It's a version of Google's Android operating system but for smartwatches and other wearables. At the moment, you need to connect the smartwatches to your Android phone via Bluetooth in order for them to work, and you'll need a phone that's running Android 4.3 or above. 

The first two Android Wear devices were launched early in July. The Samsung Gear Live and the LG G watch. I ordered both, and have been using them for the last month. I'm particularly interested to understand what the potential of these devices in health & social care might be. 

In the demo at Google I/O, a some of the demos made me think of how they might impact health & social care. One demo was was ordering pizza by speaking into your phone (1 hour and 30 seconds in the video below) and the other was ordering a taxi by speaking into your phone (1 hour, 3 mins and 30 seconds in the video below).

Interestingly, the two apps which demonstrated these features are currently only available if you're in the USA. 

So, which patients would benefit from this service? How might these features be repurposed? Instead of calling a taxi, in the future, could a patient use an Android Wear watch to call for a nurse from their hospital bed? Could a older person in a care home use an Android Wear watch to order their favourite meal?

To use Android Wear with an app, you download an app from the Play Store onto your phone and the 'wearable' portion of that app is sent to your watch. There are a limited number of Android Wear compatible apps available so far.

An example of the screens that appear with the Medisafe app 

An example of the screens that appear with the Medisafe app 

At launch, the one that interested me the most was Medisafe, a medication management solution. You use the app on the phone to enter which medications you're supposed to take, the dose, and the times. Once you do that, the reminders pop up on the watch. The photo shows you the flow of the reminders on the watch. We already know that patients don't adhere to their prescribed medications or they skip doses, and that's it's a big problem. From a data perspective, the first sign that a patient is not adhering to their treatment regime, might be because they they haven't come back for a repeat prescription after a set period, for example, 30 days.

When I tested the Medisafe app, and noticed you can tap on the 'Skip' icon on the watch, I had a thought. Given the watch is connected to Google, what if when tapping on 'Skip', the watch would ask you why you are skipping a dose? What if you as a patient are able to speak in your own words WHY you've skipped the dose? Imagine if that data as free text could make it back to the patient's electronic medical record in real-time? What insights could these data provide? Could these patient generated data enhance 'active surveillance' of the safety of drugs?

Naturally, Android Wear is in it's infancy, and there are many challenges, but I wonder which organisation will be the first to experiment and to take the risk in exploring these new frontiers? I applaud MediSafe for being the first Digital Health app for Android Wear. 

What is Android Wear like in every day use? 

I like getting notifications on my wrist. For example, when a new email arrives, the watch vibrates gently, and I swipe the screen to read the email, and can even reply by speaking into the watch. It's also possible to get turn by turn directions on your watch. I spend a lot of time in Central London attending meetings, so I've found it useful to say to the watch 'OK Google Navigate to <destination>', and get turn by turn directions on the watch, with the phone in my pocket or bag. 

The attachment for each watch, which are needed in order to charge them.&nbsp;

The attachment for each watch, which are needed in order to charge them. 

There is a reason I ordered two Android Wear watches. I knew in advance the battery life was likely to be very limited. I was right, I find that whether I wear the Samsung or the LG watch, they don't last the day. So, I wear both watches, one is switched on during the working day, and then I switch to the second watch from the evening onwards. Until they can release a watch which actually lasts a few days or a week, this is still very much only for early adopters. 

On top of that, current engineering dictates the need for an attachment which attaches to the back of each watch, in order to connect to the charger. Lose that piece of plastic, and you're stuck with a dead watch. The charging experience needs to improve drastically, if these devices are to become consumer friendly.

Living in a big city like London, where I often travel late at night by public transport, I find it much safer using Android Wear watches. Why? Well, if I'm on the train or walking down the street, and I get an email or even a call, I can read and respond without even taking my phone out of my pocket. However, using Android Wear in public places is not without problems. Background noise is an issue. I was on a train last week showing friends how it worked, and the noise of my friends talking meant that speaking into the watch took several attempts before it actually understood what I was saying. As I brought the watch closer to my face, and was speaking to it, I noticed an older lady a few seats ahead of me, who looked at me like I was insane. Can you imagine an era where many people in trains are speaking into their watches? 

I was in an office showing the capabilities to a friend, when I attempted to show him I could send him a text simply by speaking to the watch. I tried to send a text which said, "You're in hot water", and the watch seemed to translate that as "urine water". Luckily, you have a chance to cancel the text or email by tapping the watch, whilst it's in the process of being sent. 

You can see from my video below, that even in a quiet environment, that asking the watch to send a text to 'Doctor' [pre-programmed contact in my phone] doesn't work the first time I try it.

For those that like to monitor your steps, you can see your steps by saying 'Ok Google show me my steps'. It almost feels like a step backward in user experience. That's a time when I want a button! In fact, the LG does not have an on/off button, as it's designed to be 'always-on'. I prefer the Samsung which does have an on/off button. 

The Samsung Gear Live has a heart rate sensor, whilst the LG does not. I was at the gym yesterday, clearly out of breath having just did a sprint on the treadmill. Upon finishing the sprint, I said 'OK Google measure my heart rate' to my watch, it returned back a reading of 61bpm, which is even lower than my resting heart rate. If Android Wear devices add more sensors to monitor our health, how can anyone be confident that the data are accurate?

How can Android Wear make an impact? 

Right now, these smartwatches are crude, clumsy and seriously flawed. During a month of testing, they are often more dumb than smart. Many of you will simply see Android Wear as a gimmick, and regard the devices as having no value in health and social care. Today, no value but what about tomorrow, next week or next year?

Remember the app that was launched called Yo, which raised a $1 million in funding. At first glance, the app appeared to offer little value or utility. However, it has been used by Israeli programmers to allow people in Israel to get notifications of incoming rocket attacks. A husband in California recently used wrist based wearable technology to monitor the health of his wife who is comatose. 

You may remember a post I wrote in May 2014 exploring the concept of using technology such as the Samsung Gear Fit to allow patients to have wireless electronic wristbands for hospital stays. I remember some hospital doctors dismissing my idea as absurd. Recently, Apple were granted 58 patents, one of which relates to a wireless hospital wristband which could transmit data to a smartphone. 

It's already possible to control lights at home with Android Wear, as can be seen in this video. When see that, I wonder how Android Wear could help those with limited or no mobility? As this technology evolves (and it will evolve rapidly), how might Android Wear help not just patients, but healthcare professionals and carers? Will we ever see apps for Android Wear developed and launched by hospitals?

In the 21st century, organisations that appear innovative don't always manage to respond as quickly as they'd like to new ideas. Take British Airways, who have pioneered the use of wearable technology on flights by trialling 'happiness blankets' that allow you to monitor how you're feeling when you're flying. Yet, they're letting Delta and American airlines be the pioneers, when it comes to allowing passengers to download their boarding pass to the Android Wear watch [Although, using Android Wear as your boarding pass isn't as easy as it sounds]

Some of us are waiting for the Moto 360 smartwatch to launch, which promises to be a bit more sophisticated than the current Samsung/LG watches. Others await the anticipated smartwatch from Apple. One barrier to Android Wear watches becoming successful, is that they need to be paired with a rather expensive smartphone with a data plan. 

Surely, the ideal smartwatch would be one that could connect to the internet on it's own? Now that sounds like science fiction. Not according to AT&T's Head of Emerging Devices, Glenn Lurie, who predicts that by the end of this year, wearables will have their own cellular connections, and be independent of smartphones.

In fact, just last week, Timex have introduced a smartwatch that has it's own 3G connection and doesn't need a smartphone to work. It's aimed at runners, and doesn't have the notifications or voice input of Android Wear devices, but imagine if the 2015 Android Wear watches also have their own 3G connection? Can you envisage a future scenario where this technology could benefit health and social care? Are there risks associated with embracing Android Wear that we are not considering? Which will be the next Digital Health app on Android Wear?

What new possibilities might be created by these developments? What will this space look like in 12 months time? Could these devices be a new source of real-time patient generated data? Or will Google's Android Wear ultimately fail due to privacy concerns? Would you feel comfortable with a watch attached to your skin that in the future may be streaming data from your body back to Google?

areyouready.jpg

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

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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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