How do we measure health?

I saw a tweet which made me really think about our existing approaches to measuring our health. 

Morgan Gleason is a 15 year old girl who lives in the USA. She was diagnosed with a rare disease, Juvenile Dermatomyositis (JDM) at the age of 11. From her website, "The main symptoms of JDM are weak or painful muscles, skin rash, fatigue and fever." I wonder how many other Morgans are out there? How many feel that their voice as a patient needs to be heard?

I speak to patients regularly as part of my research in Digital Health, and many of them tell me when they visit their doctor, what they want is health. Not Health IT, Digital Health, Health Outcomes, but plain and simple Health. There is too often a tendency for those in health & social care, in whatever function, to prioritise on what makes their lives easier, what makes the system more efficient or even what allows them to increase profitability.  

We're hearing more and more talk about data driven health. For the last decade, I've worked with epidemiologists and health economists in the pharmaceutical industry to use patient data the USA, UK, France & Germany to help decision makers understand how drugs are used in the real world. My work has contributed to speeding up drug development and helping to make drugs safer. So, what kind of data on patients? Typically, data from 'real world settings', i.e. the doctor's office or the hospital. One of the most common types of research projects I've worked on, has been to use these databases to help researchers understand the natural history of a particular disease.  For example, when I look at the data, I can answer questions such as;

  • When were patients diagnosed?

  • What the patients were diagnosed with?

  • Were the patients treated after diagnosis?

  • If so, what kind of drug?

  • Were lab tests ordered?

  • If so, what were the results?

  • When patients were hospitalised?

  • How long the patients were hospitalised for?

What's frustrating for me and others is that the existing data collected from doctor's offices and hospitals doesn't show the full picture of a patient's health. If I have to look at medication adherence, and if the database shows that some patients don't have a repeat prescription for their medication when they're supposed to, why is that? 

The transactional data currently available from healthcare systems doesn't tell me WHY. With 'Big Data' being frequently part of  conversations about innovation in health & social care, collecting even more of the same type of data doesn't seem logical. There are major gaps in existing 'Big Data', and for me, that's patient generated health data (PGHD). It's the marriage of 'hard' data from the system and 'soft' data from the patients that could be the key to meeting the challenges ahead of us.

How do individuals measure their health?

What value might be unlocked if we understood how different people measure their health? The system might currently measure someone's health based upon clinically validated instruments, i.e. blood pressure, blood glucose, cholesterol, and so forth, but how do people measure their own health? More importantly, how can the system accommodate data such as whether Morgan is able to ride her horse or not? 

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More and more people have been using activity trackers such as Fitbit to track how active they are, and even using the social elements of the app to compete with their friends and family. Some are even sharing the data & insights gained from their Fitbits with their doctors. For many medical professionals, the data from consumer devices such as Fitbit has limited or no clinical value, even if they had systems which could incorporate such data into the patient's record. The array of hardware and software increasingly becoming available to consumers to monitor aspects of their health is largely unproven. So what to do? 

It's fascinating to read about Dr Josh Umbehr, a doctor in the USA who not only welcomes patient generated data from devices such as Fitbits, but has built his own computer system in his practice which can accept data from a patient's Fitbit. “We don’t know what all this data means, yet,” Umbehr said, “but I can discuss it with the patients and we can both follow it.” 

I have much sympathy for over worked doctors who are apprehensive about dealing with these new streams of data. Whilst patients collecting all sorts of (unvalidated) data about themselves sounds great in theory, it could be dangerous if used and interpreted in isolation. I even ran a Health 2.0 London event in 2013 entitled, "Information Obesity: A possible side effect of Digital Health?" Having to deal with patient generated health data could even put physicians at risk, as Sue Montgomery points out, "providers could be held liable if they don’t review all information in the patient’s record—if this lack of review leads to misdiagnosis or other patient harm."

However, do patients wishing to share data from their Fitbit signify the emergence of a new era where patients can themselves choose to capture (and share) data that is important to them? Thinking back to the patient databases I work with, if I observe that a patient doesn't visit the doctor for 6 months, does that mean during those 6 months they were healthy, they were well? 

What new discoveries might happen if patients were able to bring data into the system that measured health based upon their own experience? Would that future involve having to reboot Health IT infrastructure as we know it? There is already the pioneering personal health record system called Patients Know Best developed in the UK, which in March 2014 had the ability to integrate data from 100 devices and apps.

However, should we limit patient generated data to structured data like number of steps or number of hours slept? In a thought provoking post about patient generated health data, Dr Scott Nelson says, "Unstructured data gathering tools like Apple’s Siri could be used to capture and store patient verbal input and feedback on regular basis. This unstructured data could be parsed into structured formats that could then be automatically organized, analyzed, and visualized for doctor’s use at the time of care." 

If patients like Morgan were able to use Siri to measure their health simply by speaking into the phone, why aren't we offering that to patients today? Would you feel comfortable sharing how healthy you are feeling by speaking into your phone? Who is thinking about the patient data in the form of digital diaries, video, audio, pictures? Are we heading towards a world where the data on your smartphone will reveal more about your health than the data collected during your visits to the doctor?

Understanding human health

If medicine revolves around disease, what if we could measure and maximise wellness? Dr Lee Hood in the USA aims to see if we could with his 100K Wellness Project. It's an ambitious study that aims to enroll 100,000 people over the next 20 years (subject to funding). What I find fascinating is that Dr Hood wants to quantify "wellness". 

Do we have to reboot the entire system of medicine to truly understand human health? New research suggests people with friendly neighbours and strong community ties are less likely to suffer heart attacks. When was the last time your doctor asked you how friendly your neighbours are? When was the last time your doctor asked you if you feel like you belong to a community? Even if they did ask you these questions, where on the paper form do they record such information?

Where have you lived? In Bill Davenhall's TEDMED talk in 2009, he shows how where have lived can impact our health. Yet, our place history is not in our medical records. Now, an electronic health record (EHR) is defined as a systematic collection of electronic health information about an individual patient or population. Ironically, when EHRs are being developed, how many stop to ask patients how THEY measure their health? 

It's encouraging to read of a system that is building technology today which allows us to understand what's important to a patient. For example, the Hudson Center for Health Equity & Quality have developed a "system that captures patient data on who the patient actually is, what is important to the them and what’s preventing the patient from getting the necessary care." We need more institutions to take these bold leaps forward. 

The future

Whilst it's clear that health & social care systems are being stretched beyond their limits, what's not clear is how we prepare our people, policies & processes to be able to cope with an increasingly complex and uncertain future. Just because we've measured our health in a certain way up till now, do we keep doing the same in future years? Can we really accommodate the needs of all stakeholders? Who will be the winners and losers in this new era? Technology is merely the tool here, and probably the simplest factor in the equation. Ultimately, it's the combination of people, policies and processes moving in tandem that will trigger the change many of us are hoping will occur. 

Moving forward won't be simple or easy. Yes, change is typically tough to navigate and often downright terrifying. However, the inspiring Sir Ken Robinson reminds us that "imagination is the source of all human achievement". Yet, the most dangerous words I keep hearing from decision makers in health & social care are "We've always done it this way". Is your organisation tapping into the imagination of your employees?

I'm curious to know what health means to YOU, and how YOU measure your own health? Feel free to leave a comment below, reply to me via Twitter or email. 

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

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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?

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

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Robots in health & social care: Terrifying or marvellous?

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

The perceived threat

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

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

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

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

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

Who is pushing the boundaries?

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

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

What does all of this mean?

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

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

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

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

Fact from fiction

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

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

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

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

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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,&nbsp;Dave deBronkart, also known as ePatientDave!&nbsp;

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 &amp; 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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