Could every patient become an agent for change?

Our bodies generate data 24 hours a day, 7 days a week. It's typically only captured when we interact with the health & social care system, i.e. at the doctor's office or hospital.

Given how rapidly technology is evolving, we are looking at a possible future, where we may be able to capture data from our bodies 24/7. We might be able to learn so much more about the state of our bodies (and minds), not only when we are sick, but also when we are well. From a patient's perspective, sounds potentially useful, right? Provided we don't all have to train up as statisticians to make sense of these data. 

I spoke at an event in April hosted by the Connected Digital Economy Catapult about how in 5 years time, the data we collect about ourselves, may be more powerful than the data the system collects about us. You can see the highlights of the panel discussion in the video.

Kathleen Frisbee, an executive at the Veterans Administration in the USA, has recently stated that "patient generated data is going to be the thing that really transforms healthcare". 

Not everyone is as optimistic. Many in the medical profession have doubts about the accuracy & clinical value of data generated by the current crop of wearable technology & health apps. They do indeed have a point. After all, a doctor often has to work with an electronic health record (EHR), which records the medical history for patient, i.e. when they were diagnosed, treated as well as recording lab test results and free text notes from the doctor. There are standards for those data, such as clinical coding systems like ICD9/ICD10 that are used to classify diseases.

Perhaps much of the data that patients might generate using new technologies in the future will have limited or no clinical value according to the design of the EHR? The healthcare system is built upon the biomedical model, as Dr Pritpal S Tamber explains in his recent post where he discusses the future of health. What if I capture data about my health that is meaningful to me and my life, but the system either dismisses that data or cannot integrate it with the EHR? 

A 7 year old girl in Singapore came up with the idea for an app that helps parents record how much time they spend with their children. Perhaps how much time a parent spends with their children each day is the most valuable measure of their health for them? Patients who don't take medication they've been prescribed is a huge issue. What if patient generated data tells us that some patients don't get their repeat prescription because the queue at the pharmacy is simply too long?

Susannah Fox, an amazing thinker, in her recent post, says "Patients and caregivers have knowledge that is worthy of being enshrined and shared. What would a learning health system look like if it honored all participants’ intelligence?"

It makes me wonder whether the modern healthcare system is fundamentally flawed due to the lens through which it views the people who it's supposed to serve?

Does the system really want to change?

When it comes to the system, the NHS, I've had little success in engaging with it, even when I ran Health 2.0 London. It's been frustrating, as I want to learn more about the system's challenges, and how my ideas might be able to help. Last November, Pascal Lardier from Health 2.0, wrote about the experiences of entrepreneurs who found it difficult to work with the NHS. 

I suspect things are changing. Why do I say this? I've been invited to the HSJ Innovation Summit, which takes place this week. Their website asks the question, "Is it possible for a 20th Century creation to still be innovative in a 21st Century world?" 

I have also been invited to be part of a panel next week judging applications for the Quality in General Practice Innovation Fund at Tower Hamlets Clinical Commissioning Group. 

Many of my peers tell me to stay clear of the NHS, citing their own negative experiences. As an eternal optimist, I want to believe that as a system, the NHS really does want to change. That's why I've accepted both invitations. I'll be writing a blog post about my experience of both events. 

The key to a truly patient centred NHS?

Whilst the majority of patients I speak to are very satisfied with the NHS, I do speak with some who have felt frustrated at how they feel powerless when they feel they have been let down by the system. We hear much talk about patient centred care, but a system that lives and breathes those words every second of every day is still not with us. 

We can make patient centred care a reality, and our data is going to be key to that transformation. Once the data we collect as patients becomes more valuable than the data collected on us by the system, that's the tipping point. Provided we own and control our own health data, we can finally hold the system to account. "More and more people are getting less and less happy about simply surrendering information and getting nothing in return", says Patrick James, in this BBC article on Big Data. He also believes that "Increasingly, consumers and customers will attempt to hold back their data".

Interestingly, the Technology Manifesto published this month by Policy Exchange, puts forward that government policy should allow citizens to control how their personal data in public services are used. In the manifesto, using EHRs as example, this is what UK citizens should be able to do, "They should be able to manually assign access rights to the general practitioners and doctors of their choosing".

Does this mean a new era of solidarity for patients, not just in the UK, but globally? If patients are not being treated fairly, could groups of patients withdraw access to the data they collect 24/7 about their bodies, until the government, health insurer or pharmaceutical company takes action? Are their insights about population health that are waiting to discovered if we can marry clinical EHR data with data patients generate themselves? Will we be overwhelmed by all this data about us streaming 24/7? Where will all this patient generated data reside? How can we keep it private and secure? So many questions, and also, so many possibilities. 

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

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All we need is more data, right?

Our problems in healthcare today, and those we will face tomorrow, will most likely be solved by opening up datasets, throwing them into the hands of software developers & entrepreneurs, and letting the magic unfold. That was the underlying premise in Washington, DC this week. I flew over from England, to attend the 5th Health Datapalooza.

I've wanted to attend for the last 2 years, but other things came up. I have heard many things mentioned about the event, but wanted to experience it for myself. I'm glad I did.

Catching up with the legendary, Dave deBronkart, also known as ePatientDave! 

Catching up with the legendary, Dave deBronkart, also known as ePatientDave! 

The event is aimed at improving US healthcare, but since America is often ahead of the world in health technology, I wanted to understand what they are doing. Compared to the often austere environments of conferences back in England, the datapalooza was full of glamour & glitz. 

2,000 people were in attendance, and kudos to the the organisers for bringing all these people together. We were told that attendees had come from as far away as India & China. 

I wonder what people from 'emerging markets' like India & China would think when visiting the most powerful nation on Earth for a conference, only to find the wifi at the venue didn't work terribly well?

The opening keynotes on Day 1 were given by Dr Elliott Fisher, Karen Ignani, & Todd Park. I've been hearing great things about Todd Park for a while now, but never heard him speak in person, until now. He spoke with such energy, vigour & passion that you got the feeling he genuinely wants change. 

However, something bothered me. In the program for the event, it states how we are taking an important step towards a patient centred health system, powered by data. So, if the datapalooza was all about patients, why were there no patients on stage giving an opening keynote? We had keynotes from folks representing the medical profession, US government, and health insurance industry. From an attendee's perspective, I see this as incongruent. I'm not the only one who feels this way.

The UK's Secretary of State for Health, Jeremy Hunt also gave a keynote. Whilst I enjoyed most of his talk, I found it odd that when talking about why we should have greater transparency in healthcare, he had a slide with Joseph Stalin on it [Note: Stalin was a 20th century Soviet leader whose actions led to the deaths of millions]

Hearing Dr Atul Gawande speak was inspiring. He gets straight to the point, and shared his own practical examples. 

Once the keynotes were over, the rest of Day 1 had quite a few smaller sessions, running concurrently. Covering business, clinical care, community, research & more, these looked like they could be very interesting. However, since 3 or 4 sessions were running concurrently each time, you were forced to pick only one. I often found myself frustrated, as I liked two different sessions held at the same time. I don't enjoy it when conference organisers try to squeeze too much content into one day. 

One of the sessions I really enjoyed was, "Citizen/Patient - The Great Data Debate". Much of what was discussed was who should have access to our data, and how would the data we collect as patients be integrated with the data the system holds on us. There seems to be much uncertainty regarding the flood of patient generated data coming over the next few years. How will we ensure it's accurate? Who will own it? Who should develop standards? Government or industry? Do we even need more data? How can we trust those that hold our data for us? An executive at the VA recently stated that "patient generated data is going to be the thing that really transforms healthcare".

I was not able to attend the keynotes on Day 2, but one of the best quotes I found on the Twitter stream was from Adriana Lukas, founder of Quantified Self London. 

I did manage to attend one of the last sessions on Day 2, "Introducing OpenFDA". A new initiative, aimed at making it easier & faster to access public datasets from the FDA. They are starting off with all the adverse drug event reports from 2004-2013. It's still in beta, the idea is to get entrepreneurs to build new tools & services using the OpenFDA API. Since I have worked in drug safety myself, I understand the potential value of new insights that may be gained by using these existing data in novel ways. Definitely worth keep an eye on how OpenFDA develops.

More data, fewer problems?

I know from my own practical experience that can data can be used to improve decision making. The smart use of data is only a good thing for everyone in health & social care. However, we often run before we can walk. I observe many healthcare organisations with "Big Data" on the strategic agenda. What's ironic is that these organisations often don't leverage the data they already have. I'll never forget a client I worked with many years ago. As a marketing manager, she wanted the agency I worked for to build her a brand new marketing database, complete with integrated predictive analytics (i.e. the ability to find those customers most likely to respond to a marketing campaign). I suspect, she'd been influenced by a white paper she'd read. 

I pushed back, and challenged her. I knew that she didn't even know the basics about her customers. At that moment, I believed all she and her team needed were a few basic charts in Excel. I convinced my management & the client not to sign off on the huge expensive database project. I turned out to be right, one day's work to analyse the existing database by myself to produce 3 basic charts for my client, generated new insights to keep her & her team busy for a month. Less really can be more. 

What would Abraham Lincoln say about the rights of patients to own their health data?

What would Abraham Lincoln say about the rights of patients to own their health data?

In the future, as more data about our health is collected, stored & shared, privacy & security will become even more important. Yet, not one keynote at Health Datapalooza with a focus on privacy & security. How can we make informed choices, when our leaders are shouting about the benefits, whilst being silent about the risks? It's healthy to consider the dark side of all these data being collected about our health. 

Consider the keynote on Day 2, by Dr Francis Collins, Director of NIH who cited Global Alliance for Genomics & Health during his talk. Sharing our genomic and clinical data to help advance science and medicine, that's admirable, right? Let's dig beneath the surface.

As I wrote in a post last year, the global alliance met with Google, Microsoft & Amazon Web Services at the end of 2012. Read the 4th paragraph on Page 16 of their white paper that was published 12 months ago. In a healthcare system that's powered by data, ask yourself, who stands to gain the most from collecting, storing & sharing genomic data on each of us? 

The other thing I noticed during the event was the focus on data in healthcare, with little reference to social care. Oh wait, there was an app demo by a firm called Purple Binder, which uses web applications to help people find community health services. Brilliant, but not every American uses the internet or email. 

Pew Research Center's report from April 2014, when looking at seniors, found that 41% do not use the internet at all, 53% do not have broadband access at home, and 23% do not use cell phones. In a thought provoking blog post this week, Victor Wang, reminds that that Dementia care costs 5 times more than Global Warming. 

What do people living with Dementia need? The ability to download their own data or someone to care for them? Given our finite resources, what's a better use of our money? Building a new data platform or recruiting more nurses?

In the 21st century, do we want health & social care systems powered by data, or by people?

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

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The leading healthcare organisation of 2025 will be..?

Google, Apple, Samsung or perhaps the government? Actually, it's likely to be the organisation that manages to collect the most accurate, complete and representative data about our health. That organisation may not even exist yet.

That's right, your data, our collective data, is likely to make other people very rich & powerful over the next decade.

A couple of days ago, I was in Dublin for the Health XL Global Gathering, which attracted Digital Health innovators from around the globe. Three moonshots were announced, one of which was the use of Big Data to improve life expectancy. Bill Taranto, President of Merck Global Health Innovation Fund spelled out how they view our health data. Now, he was talking in the context of investing in startups that can build useful tools & services using our health data.

I don't have any issue with organisations wishing to profit from our health data. After all, we need incentives to spur new ideas, products and services that could solve the challenges ahead of us. Wherever I go in the world, I hear panel discussions about the need for "Big Data" to help patients, and the immense benefits that will arise from capturing, storing and using these data.

To the masses, it sounds like a no brainer, it's utopia, just tell me where to sign up. Unfortunately, that's not true. The conversation lacks balance. Despite regulators weighing up the risks vs benefits of any new drug prior to approval, Big Data seems to be lots of benefit, with minimal or no risk, according to conferences and media headlines.

That is completely inaccurate. There are massive risks on this journey, and we don't hear enough about these risks. Society needs to have a balanced conversation about our health data, not just a few people in conferences or academics in scientific journals. The data that we collect every day in the future on our health WILL at some point become MORE valuable than the data collected about our health when we visit the doctor. What I also find sad is that these panels are discussing how Big Data can help patients, but there patients are nearly always absent from the panel. Come on conference organisers, give attendees a chance to hear the voice of patients from the local community, even if what patients say upsets your corporate sponsors. I understand the situation. Writing the phrase, "patient centred care", is easy. Living those words is another thing altogether.

Many equate the value of our health data with the value of our financial data. Again, that's wrong. It's not the same.

Those that know me well, have heard my passion for moving to a world where patients own and control their own health data. I've written and spoken about my vision of the future many times already. What gave me hope this week, was the news from Samsung at their Voice of the Body event, that their new platform will do exactly what I've been campaigning for. This is brilliant news, and Samsung are blazing a trail here. I wonder if Apple & Google will follow their lead?

Muki & John from Intel Labs. Awesome people!

Muki & John from Intel Labs. Awesome people!

Now, I'm here in Washington, DC today for the Health Datapalooza event, where 2,000 people come together and exchange ideas on how data can be used to improve human health. Many of the leading thinkers & doers from around the globe will be here over the next few days, and I really hope that the conversations that take place are more balanced than in previous years at these types of events.

Well, I was blown away by the pre-conference workshop I attended today, hosted by Intel Labs and We The Data. An interactive workshop that tackled many questions ignored or glossed over, such as data literacy, and trust in the organisations that collect data on us. It was an extremely valuable experience.

After the workshop, I had to meet a friend outside the White House. I was running late, and asked the taxi driver with such vigour to take me to there immediately, he wondered if I actually had a meeting there! When I reached there, I was compelled to send a message to the American people.

As an aside, it's exactly 2 years since my last day at GSK, where I spent almost a decade analysing the largest patient databases from the US & Europe. As an entrepreneur, It's been a spectacular and often frightening rollercoaster ride, working under my own steam. Having the freedom to express myself has been the single biggest benefit. I appreciate that not everyone has the circumstances to quit a permanent job and walk into the unknown. It highlights to me the importance of imagination. Many organisations tell me they have limited, or no budget for innovation. I remind them, that they have a limitless resource, often untapped, the imagination of the people that work there. Can you imagine your organization behaving in a different way?

What now?

So, the next time you hear any organisation on the planet say they want to collect more data on us in order to improve health & social care, don't forget to ask them who exactly will own, control & profit from that data. Keep asking until you get an answer. Unfortunately, governments & corporations tend to listen to the masses, only when they start screaming & shouting.

Or maybe ask them why they want to collect even more data when they haven't fully leveraged the data they already have? Ask who stands to benefit the most from the new initiative? Is it always the patient, or it is another group of people?

shutterstock_38086993 (1).jpg

Maybe the leading healthcare organization in 2025 will be the one that genuinely operates with transparency, trust & integrity? Or maybe we shouldn't dream of a better world, and just accept that corporations & governments will sometimes put their own interests above those of the public good?

Do we need a World Data Organization that ensures we our digital data rights are protected just as our basic human rights are protected? What do you think? There is nothing to stop us from establishing a dialogue that enables every stakeholder in health data to ensure we do the right thing, the right way, at the right time.

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

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What is the future of data driven hospitals?

One of the critical factors for patient safety in hospitals, is that you've identified the patient correctly. The wrong medication given to the wrong patient at the wrong time could have serious, even fatal consequences. Patient wristbands are a start, but wristbands that contain barcodes are even better. According to GS1's website, in October 2013, it became mandatory in NHS England for all patient wristbands to contain a GS1 barcode. I wonder if we can improve even further?

A couple of things I've seen or tried recently got me thinking. 

My Samsung Gear Fit

My Samsung Gear Fit

Spanish airline Vueling is first to send boarding passes to a smartwatch

My experience wearing the Samsung Gear Fit on my  wrist 

Software from Japan that works with smart glasses to help you get info by looking at a barcode

In the future, if you were due to go into hospital, what if you could get your hospital 'boarding pass' sent to your smartwatch 24 hours before your visit? What if when you 'checked in' at the hospital, a member of staff was automatically notified of your arrival, on THEIR smartwatch? What if when a member of hospital staff wearing smart glasses wants to identify who you are, they simply look at your smartwatch that's displaying your barcode? 

Could that do even more to improve patient safety? Many observers continue to regard these individual technologies as crude & clumsy, and I'm right there with you.

However, when you stop for a moment, to imagine how they could be used together to do something that's never been done before, it makes you think. I ask you, what currently exists, that alone is not that great, but when combined with a couple of other technologies, solves your problem? 

Or it simply a case of repurposing wearable tech to suit your own needs, as in the case of this creative friend of mine, Anthony Harvey who want to see if the Gear Fit is capable of something new?

Now add to the mix, Bluetooth 4.1 at the end of 2014. What will moving from the current Bluetooth 4.0 to 4.1 mean for hospitals? Well, in theory, your 2015 heart rate monitor/activity tracker worn on your wrist could send data directly from your wearable device into your medical records, via the cloud.

So even before you've arrived at hospital for your surgery, they could have much more data about you, compared to the hospitals of today. As you can observe, the role of data in providing the best possible care, becomes even more paramount. 

How safe is your data in the hospital?

I shared an article on the Internet of Things via Twitter recently, and one of the people who engaged with me as a result was Scott Erven, based in the USA. He's done significant research into the security risks associated with the use of hospital equipment, and there's an eye opening WIRED article recently published about his work, and what needs to change. 

Quoting from the article, how many of you are shocked to read his findings? "In a study spanning two years, Erven and his team found drug infusion pumps–for delivering morphine drips, chemotherapy and antibiotics–that can be remotely manipulated to change the dosage doled out to patients;

Bluetooth-enabled defibrillators that can be manipulated to deliver random shocks to a patient’s heart or prevent a medically needed shock from occurring; X-rays that can be accessed by outsiders lurking on a hospital’s network;

temperature settings on refrigerators storing blood and drugs that can be reset, causing spoilage; and digital medical records that can be altered to cause physicians to misdiagnose, prescribe the wrong drugs or administer unwarranted care."

It certainly gave me a wake up call. Now, I had a video call with Scott this week, and the conversation was illuminating. With Wearables and the Internet of Things touted as technologies that are going to lead to an explosion in data (about each of us), and ultimately, be used to drive potential improvements in health & social care, there is also a dark side. 

Many of the articles, talks & press releases in Digital Health make it appear that this bold new world will be everything we've wanted in health & social care, it will be Utopia. Without stringent governance, accountability & trust, it could end up being our worst nightmare. 

What if someone wanted to hack into hospital equipment, your wearable devices or your health data, because they had malicious intent? What if an organisation, or even one person wanted to inflict a terrorist attack, and cause a serious loss of life? Instead of bombs, would they simply sit in front of a laptop & exploit the cyber security vulnerabilities that exist today (and may still exist tomorrow) in hospitals?

What if someone wanted to specifically target you, by modifying your health records to show that you'd had a mental health issue? It was just reported that a British woman had her employment offer for Emirates Airlines withdrawn after they found out her medical records revealed an episode of Depression in 2012. 

The UK has taken a bold step last year to publish the publication of mortality rates for individual hospital consultants in ten specialties. Greater transparency is to be encouraged, and hopefully will improve levels of care. Do we also campaign for publication of the hospital data breaches too? 

Can we actually trust the data the government publishes? Look at the recent scandal in the USA, at the Veteran's Adminstration, where it's come to light that the waiting time for medical treatment was misreported. 

A recent survey found that 50% of UK citizens don't trust the NHS with their personal data.

Today, when I speak to people around the world, who use any form of health & social care, they are primarily concerned about access, quality & cost. In the future, those people may be adding 'privacy & security of my data' to that list. 

The Digital Health community, along with government, has to address this sooner, than later.

Quite frankly, I don't see the point of gathering all this data on patients, if we can't assure them, that we've taken every step possible to keep it private & secure. 

[Disclosure: I have no commercial ties with any of the companies or individuals named in this post]

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Are we building technology for those that need it most?

This is a question I ask myself on numerous occasions. It also comes up frequently in conversations with people I speak to in the UK & beyond, who feel also frustrated at the intensity of focus on technology created by the "worried well", for the "worried well". A recent survey in the UK, showed that "71 per cent said that not all members of society are benefiting from computers and the internet, and over half believe that the latest gadgets and devices are built with a mainstream and much younger audience in mind."

I don't have an issue with what technology is being developed, I just wonder if we could also be developing just as much technology to help those who are often need our help & support the most? 

People who have no or very little income. Older people who don't have a smartphone or broadband. New immigrants to a country who don't speak English very well and aren't engaged with their health. Children & adults with learning difficulties who may be in a care home. These are just some of the groups that I see forgotten when I observe many new technologies being launched. 

It's 2014, isn't everyone online?

Many of the people in Digital Health (including myself) fall into the trap of assuming everyone else in society is as connected as they are. I often have to remove myself from the Digital Health bubble and get a 'reality check' by talking to ordinary, hard working, every day people. 

Globally, it's estimated that in 2013, 61% of the people on Earth are NOT using the Internet. Even in the United States, Pew Research in 2014 finds that whilst the 97% of Americans aged 18-29 use the internet, email or access the internet from a mobile device, for Americans aged 65+, this drops to 57%.

Now in virtually every major Digital Health conference or seminar I've attended, both in the UK and abroad, it's a bittersweet experience. Blown away by the ingenuity, creativity and imagination of the people on stage sharing their ideas & products, but saddened too. All this human energy, and it appears we are failing to use it to tackle some really big challenges in society. 

Is it the incentives on offer to entrepreneurs? Is it simply a case of raising awareness? Is it that nobody wants to invest in a tech solution for refugees? Or maybe the problems that are tackled less frequently, are simply not 'sexy' enough to grab attention? I can only imagine that the everyday issues facing both an 85 year old patient with Dementia (and their family & caregivers) in a care home might not be 'sexy' enough. 

Surely, all these issues are being discussed at conferences?

The only conference I've personally been to that did their best to get people thinking, was Health 2.0. I'll never forget my surprise to attend the Health 2.0 Fall conference in San Francisco 2 years ago, and seeing "unmentionables" on the agenda.

Yes, unmentionables. The topics we seldom mention, often viewed as 'taboo'. Taken from their website, "This year we'll visit even more unmentionables including an overview of the Vulnerability Index, poverty, sex and end of life issues."

Furthermore, Health 2.0 took a risk when they agreed to let me host a pre-conference workshop at the Health 2.0 Europe 2013 conference, examining Health 2.0 Tools for the elderly. That experience prompted me to write a post, "How do we make aging as sexy as global warming?"

What Health 2.0 has done is perhaps not perfect but definitely a step in the right direction, and bolder and braver than any other events I've come across.  

I recently came across a Digital Health event that can also be considered to be pushing the boundaries in this arena. The world's first virtual digital health conference, which you can attend from the comfort of your home or office or actually from anywhere! 

That's "digihealth pulse Virtual 2014", hosted by Enspektos, which kicks off tomorrow!

Now, I have invested tens of thousands of pounds of my own funds to attend events around the world in the last two years, and I've spent very little time at home. I can imagine that there are many of you, especially those with personal commitments, who would find a virtual conference to be a breath of fresh air. 

Even more impressive when browsing through their agenda, were two sessions that immediately stood out;

  • Are black, brown & female bodies benefiting from the digital health revolution? Why it's imperative that health tech works for all of us - Alisa Hughley

  • The US HHS & friends talk bringing digital health innovation to the underserved - Silas Buchanan

I find those two sessions refreshing, don't you? I hope the courage of Health 2.0, and Enspektos to include topics that may make audiences feel awkward and uncomfortable, inspires other conference organisers to be even bolder & braver in the future. 

I also know of Aging 2.0, which from their website, is a "global organization on a mission to accelerate innovation to improve the lives of older adults around the world". In fact, just a few days ago in San Francisco, USA they hosted their Global Innovation Summit. I couldn't attend, but it certainly impressed, Dr Leslie Kernisan, one of the most inspiring people I've met.

Dr Kernisan always makes me think about what her older patients need when I email her with details of the latest innovations. 

So what else can we do? 

Be more demanding is one path. Many of those out of the reach of the latest technologies often don't have a voice. Is it our duty to speak up on their behalf? 

We definitely need more programs that are designed to attract those innovators that are interested specifically in solving problems of the underserved. One new group I've recently discovered is Significance Labs in New York, whose strapline on their site inspired me to write this post. Whilst a wonderful concept, it's limited to the United States. So for me, what about the other 6.7 billion people? In particular, the needs of those in the world who have far fewer resources than what we often take for granted in rich countries? Surely, there are commercial opportunities that are being missed because the customers are not part of the "worried well"?

Perhaps, it will be Health XL that helps us in that regard. Health XL, based in Dublin, Ireland is the world's first truly global digital health mentor network [I'm one of their mentors!] Their founder, Martin Kelly, last month blogged about their idea for the next generation of startup accelerators. A couple of things stood out for me in their Accelerator 2.0 concept, global vs local, & learn from the world vs learn from Silicon Valley. Kudos on their bravery to challenge dogma in the startup world. 

In terms of the future, maybe we just accept the status quo? Maybe we accept that these are problems that are too big to tackle, and it's preferable to focus on the easier problems, right?  

Maybe we continue to focus our collective energy on developing awesome health apps despite only 20% of 65-74s in the UK using a smartphone? In those aged 75+, that figure drops to 5%!  

Are health apps the best use of our finite resources?  For many decision makers, apps are often perceived as 'innovative', but do the biggest users of health & social care actually benefit from them? How much is being spent on giving patients online access to their medical records? Would a better use of that budget be to hire extra doctors & nurses? What's the point of investing in wearable technology when we often don't invest enough in the human aspect of social care?

As much as I love digital technology, in my opinion, technology doesn't always have to be 'digital by default'. It's about responding to the need in front of us, which requires genuinely listening to the patients (and those that care for them). Perhaps we forget that tried & tested hardware and software exists everywhere, i.e. human beings. Maybe all some patients want is a smile and a reassuring hug? I believe the healing power of human touch is very often overlooked.   

I see it as out duty to use our collective talents to help those who are often helpless and vulnerable, the voices seldom heard, the people who reside at the very fringes of society and our minds. 

[For readers of my blog, there is a 17% discount on the cost of registering for the digihealth pulse Virtual 2014 conference. Use coupon code MANEESHDHFUTURE when registering]

[Disclosure: I have no commercial ties with any of the companies or individuals named in this post]

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Ideas need people, not just inspiration

Before I write about my decision to find a coworking space in London to operate from, I just want to quickly follow up regarding my last post on wearables. An interview with Dr Jay Parkinson, a "physician entrepreneur" who some call the doctor of the future, was published last week. When asked his opinion on wearables, he dismisses them as "nonsense". He also states that "I don't think people will ever use webcams in a significant way in healthcare", when asked about the possibility of people being diagnosed through webcam and mobile apps.

I ask you then, if wearables truly are nonsense as he believes, then why is the US Air Force researching developing wearable sweat sensors for realtime blood test results? When it comes to video calling in healthcare, why is the University Hospital of North Staffordshire in England undertaking a trial where doctors will consult with patients via Skype?  Have the US Air Force & NHS got it all wrong? 

My search for a place to interact with others

Now, ever since I quit my job, and have been doing my own thing, I tend to work at home, or work in coffee shops when I've got meetings in London. I can work anywhere in the world, chiefly because much of my work involves working with data. However, despite all the progress I've achieved, there are days when I feel isolated. Particularly when I'm contemplating new ideas. I experienced this as an entrepreneur before when I quit my job to daytrade on the UK stockmarket back in the dotcom boom of late 90s. I made (and lost) in 6 months, enough money to buy a Ferrari [just a figure of speech, never actually bought one!], but the experience was socially isolating, and one of the main drivers in me going back into a salaried job in a buzzy office in an advertising agency. 

However, times have changed, especially here in London. In certain parts of the city, there are an abundance of co-working spaces. I went to check some of them out. Some great places, but a mixed bag.

I found many coworking spaces seem to be designed for 5 year old children, given the horrible little chairs they have on offer. I work in the world of health, I wanted a space that had ergonomic chairs. 

I turned to Twitter to see what the crowd could suggest. 

So a coworking space named "Huckletree" replied, and so I paid them a visit, and tried working there for a day. I travel so much I don't really need a permanent desk, just a community that I can 'hot desk' in when I'm in town. 

I was impressed by the experience, I signed up for their flexible package, allowing me 10 days of 'hot desking' a month. So why did I choose this unknown space, when there are many more established and well regarded coworking spaces in London? 

7 reasons 

1. Community, community, community. I've learnt over the years that the communities you inhabit and/or create can either open your mind or close your mind to new opportunities. Whilst many tech coworking spaces have very diverse communities inside the offices, the environment once you leave the space is very tech centred. What I love about Huckletree's location is that it's in the middle of Clerkenwell, a bustling London community. When I step out of their space, I come across all sorts of people, from office workers grabbing their cappucinos before work, to workers from the historic Smithfield market who might be finishing their shift. It's also literally moments away from the pub where I held my first Health 2.0 London event in 2012, so maybe there is a special energy about the area for me?

The sensor of humour adds to the vibe!

The sensor of humour adds to the vibe!

2. The other coworkers - a really mixed bunch, it's truly refreshing for me. The space is still just a few weeks old, so it's not full up yet. However, the people I've met there so far are in completely different industries (not all are tech), working on some very fun projects and ideas. It's easy for one to get stuck in a groove, especially as one gets older. Already, I've had my thinking challenged by conversations I've had at Huckletree over a coffee, and I hope that continues with each visit. 

3. The potential - I'm inspired by those who dare to be different, who experiment, who take risks in life. When I did my trial day, I could 'feel' the potential for Huckletree to become one of the best coworking spaces on the planet. Like many of the decisions I've made in my career, I've simply listened to my 'gut feeling'. I don't know if Huckletree will become the best coworking space in the world, but I don't see why not, and I want to be part of their journey. 

2.1A USB sockets!

2.1A USB sockets!

4. The small details - Regular readers will have noticed I have an array of gadgets, and all of these gadgets run on batteries that need charging. As a geek, I always search for USB power ports that offer 2.1A, as it means faster charging of my devices. At Huckletree, I noticed each desk had TWO 2.1A USB ports for charging devices. That makes a BIG difference to me. In addition, they have an abundance of regular power sockets. 

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5. Sustainability - It's the UK's first sustainable coworking space, and that's to be applauded. It's again the small details that I notice, from the eco-kettle, to the sheer amount of natural light that pervades the space through the multiple windows. 

6. Hours of operation - I found some coworking spaces didn't offer pay as you go memberships and/or were limited to 9-5 office hours. Many of my clients are based in the US, and the fact that Huckletree are open until 8.30pm Mon-Fri, is really useful for me. 

7. Multiple spaces - I often need peace and quiet when doing some research, and sometimes I'm on the phone all afternoon. Sometimes I want to have a private phone call where nobody can hear me. I was impressed that Huckletree has been designed to cover all my needs. One floor looks like a normal coworking space, but when you go to the top floor, it's designed to be a 'quiet' space with no phone calls allowed. In addition, there are 'Time Machine' booths where you can have that private phone call or teleconference. 

The quiet area on the very top floor

The quiet area on the very top floor

I also found the vibe of the founder, Gabriela Hersham to be very unique, and it's her values that resonate throughout the space. It's clear that Gabriella has put her heart & soul into creating Huckletree, and since that's how I approach my projects too, it reminds me of how powerful it can be when one is authentic and aligned to one's core values. 

Here is a short video from Gabriela explaining more about Huckletree. 

For readers of my blog who decide to sign up to Huckletree before May 31st 2014, I've managed to get you 15% off your first month's fees. Simply use the promotion code, thanksmaneesh. 

Huckletree may not be to everyone's tastes, but I'm likely to be working from Huckletree at least 2 days a week. So if you find yourself in the area and wanting to chat about Digital Health over a cup of coffee, don't be a stranger! 

[Disclosure: I have no commercial ties with Huckletree] 

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Wearables: Hope or Hype?

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

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

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

We all have to start somewhere

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

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

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

Courageous conversations

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

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

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

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

Imagining a better tomorrow

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

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

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

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

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

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Want to innovate? Start listening

In my last post, I wrote about the launch of the Babylon health service here in the UK, and how I observed the omission of the T&Cs and privacy policy from the website. I tweeted about it early on Tuesday morning, and by Wednesday evening, Babylon's website had been updated. Ali Parsa, founder of Babylon left a comment at the bottom of that blog post, explaining that they'd listened to me, and made changes to their website. This simple act of listening (and responding swiftly) is extremely powerful in fostering a culture of trust. Other healthcare organisations, both large & small would be well placed to learn from Babylon's leadership. It's also a lesson for innovators, who would benefit from listening to the needs & potential concerns of their users before launching a new product. 

Still begs the question, if innovators working in a regulated space, are legally obliged to have such lengthy terms, full of complex legal jargon, what if we had easy to understand terms for mobile health apps? Would that result in MORE patients feeling they can trust these new services?

If the regulators are listening, please do something about this.

It's disconcerting to observe brilliant people like Ali Parsa, pushing the boundaries of healthcare but having to operate within a regulatory framework designed for the 20th century. 

Listening & connecting - it's an exciting combination! 

I was honoured to be part of a panel discussion yesterday, titled 'Facilitating innovation with Open Health Data', hosted by the Connected Digital Economy Catapult. It was the launch of the Open Health Data platform, where "We're challenging technologists, analysts, visualisers and businesses to show the world what can be done with open health data." [For a definition of Open Data, see here]

The discussion generated a number of insights, many of which centred around privacy of our health data, and who in the future will have access to it, and who might be profiting from it. It's clear that simply saying, let's share more of our health data in the public domain so we can innovate in healthcare, is not enough to convince the general public. A national (and ideally global) debate to help us move forwards is sorely needed. Is anyone listening?

From my perspective, yesterday was also the tube strike in London, so many people, had to walk much more than normal (including me).

It got me thinking, what if Open Health data was 'mashed up' with the aggregate data from Fitbit users in London to quantify the impact of the tube strike on both people's health as well as the NHS? Would a side effect of the tube strike mean that people walked more and the number of visits to GPs declined in the next few days? Or would this 'mashup' reveal that there were more walking related injuries placing pressure on the system? If the former, should London's public health policy including closing the tube once a month?

What if GPS data of ambulances was open, just like the bus & train GPS? Could a startup build an app that allowed you to understand exactly how long it would be before the ambulance arrived to your home? Would such an app have helped the rugby player who waited 2 hours for an ambulance? 

What was most surprising for me was how the Neil Crockett, the CEO of this new 'Digital Catapult' wanted to listen to the audience and understand what they needed to build new services, new companies and to innovate in Digital Health. I've often returned to London after my visits to Silicon Valley, feeling frustrated and despondent with some of the 'risk averse' attitudes displayed by some leaders in London (when compared with the mindset of leaders in the Valley).

However, I left the event yesterday feeling full of hope for the future, that there is now an organisation in my home city that is truly prepared to listen to the needs of Digital innovators. In my eyes, it's a real turning point, and over time, might even encourage our brightest minds to stay in the UK rather than leaving for Silicon Valley. 

Taken from the Digital Catapult's website, "Our key differentiator lies in our neutral convenor role. There are many opportunities for industry-led innovation and growth that have not gained traction because of commercial tensions between the players. The UK's innovation landscape has many areas of excellence but is often fragmented and lacks critical mass – we will act as a connector to bring innovators together to collaborate on programmes and projects of significance." 

Upon leaving the event, I got an email about an event in London next month, 'The future of Digital Britain: Why technology should be front & centre of parties' ideas for the 2015 election'. Is it me, or do others also feel a new energy pulsating through the UK this year?

The rise (and fall) of Wearable Technology?

You may have noticed recently that commentators are dismissing 'wearable tech' as a fad & that the market is dead. Well, two signs it might not be a fad. The world's largest online retailer, Amazon, has just launched a 'wearable tech' storefront. 

Then, this weekend in London, a 2 day free (but sold out!) event on Wearable Technologies, not just with demos of current tech, but asking questions such as;

"Will your smartphone soon become outmoded?" 

"Will you be buying clothing with location technologies?"

"Maybe your socks will record your journey history?" 

So, WHO do you currently listen to? Are you listening to the people who created the past, or are you listening to the people creating the future?

If you are listening, are you listening without judgement?

What's it going to take before your organisation decides that 'listening' becomes one of the key ingredients in the recipe for innovation in Digital Health?

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A doctor in your pocket?

A new app was launched in the UK this week, Babylon, which promises just that. Their website states "We are building the world’s first integrated digital healthcare system combining the latest advances in technology with modern medicine. "

Additionally, an article in Wired UK says "Designed to make booking healthcare appointments as simple as 'booking a Hailo cab', Babylon gives patients access to doctors 12 hours a day, six days a week for £7.99 per month." 

This is extremely exciting, and particularly inspiring that it's come from a UK company, not a US one. Kudos to Ali Parsa and his team for pushing the boundaries of what we know as Digital Health. According to the same Wired UK article, Parsa has said that in their beta trial prior to launch, the company could resolve 75% of problems virtually, and just 25% of cases required a visit to a clinical professional. I will be following their progress with much anticipation, and truly hope it will improve how healthcare can be delivered in the 21st century, not just in the UK, but globally. 

However, when I viewed their website, no terms and conditions or privacy policy were available to view. When I searched for the app in the Play Store, I found the same. It was only when downloading the app, and creating an account within the app, that you could view the terms & conditions and privacy policy. Given the recent care.data saga over the poor communication & lack of transparency regarding the use of our health data within the NHS, I find this oversight, quite surprising. In my opinion, transparency in terms & conditions is critical to how organisations gain the trust of the consumer when rolling out new services. 

The video below shows you what I found when I viewed the terms and conditions & privacy policy within the app. Despite having the latest Samsung S5 smartphone with a rather large screen, I was swiping for many pages. Full of legal jargon that left me confused [and I'm a digital savvy person who has worked with data for 20 years], it makes me wonder if the average patient wanting to use the app would be able to make an informed choice? It's not reflective of Babylon per se, this applies to virtually every app I download today. Do YOU read the T&Cs & privacy policy of every app or website you use? Are you even AWARE of what terms you've accepted? How many of you have heard of Terms of Service Didn't Read?

Looking at T&Cs of Babylon Health app version 1.0.2 on Play Store - 30th April 2014

I did share my concerns over email with Ali Parsa yesterday, and he swiftly replied, promising to add the T&Cs and Privacy policy to their website. I appreciate as a startup, they must be super busy, so kudos for responding so quickly. So, when journalists write articles about new health apps, should they also be reviewing & sharing their opinions on how patient friendly the terms and conditions are?

Dr Watson in your pocket

What if you could ask IBM's supercomputer, Watson, a question at 3am via an app, regarding your child's symptoms, and get a 100% trusted response based upon the latest medical knowledge? That could be a possibility in the near future, according to this article in New Scientist.

2 days ago, IBM unveiled the 25 ideas selected in response to their The Watson Mobile Developer Challenge issued at February's Mobile World Congress in Barcelona, Spain. Out of these 25 ideas, just 3 will be chosen to be developed, making them the first 'Watson in the cloud' apps. You can browse the 25 ideas here, with 6 of the ideas having a focus on health. 

Remember I recently talked about a possible future in 2025, where doctors are unemployed? Look at how rapidly Digital Health is evolving before our very eyes, and you begin to wonder what the implications would be if you had a service like Babylon in the future, powered not by human doctors, but by Watson in the cloud? How comfortable would you feel with your child's medical history being processed by a supercomputer in the cloud? 

Think of all the companies, products & services that haven't even been invented yet! 

For the 65% of the UK that has a smartphone, Babylon & Watson could both transform how healthcare is delivered to them.

For the 35% of the UK that don't have a smartphone, looks like you'll still need to make a physical trip to a doctor's office until 2018 [by 2018, it's forecast that smartphone penetration in the UK will be 100%]

Whatever happens in the future, no matter what shiny new gadgets & services you are offered, I strongly recommend doing your own research to understand where who owns your health data, who has access to it, and who profits from using it!

Remember, it's YOUR health data from YOUR body that is central to the anticipated revolution that Digital Health promises all of us. Are you fully informed on what data you've agreed to share and with whom? Want to understand more about what's at stake? This Guardian article published this week arguing that it's time to solve problems around data privacy is a good place to start. 

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