An interview with Molly Watt: Putting Usher Syndrome on the map

For this post, I wanted to share Molly Watt’s story. I first came across Molly in 2015, after I read her Apple Watch post. I had also just received my Apple Watch and was curious about other people’s experiences. What’s different about Molly, is that she has Usher syndrome, which is a rare genetic disorder caused by a mutation in any one of at least 11 genes resulting in a combination of hearing loss and visual impairment, and is a leading cause of deafblindness. Usher syndrome is the most common cause of congenital deafblindness (the elderly is the biggest group). Usher syndrome is incurable at present. Usher syndrome hasn’t held Molly back, she’s even set up her own charity, the Molly Watt Trust and much more. When reading each of her subsequent blog posts. her writing was creative, courageous and candid, and that resonated with me. In fact, it resonated so strongly with me, I decided to visit Molly in her home town of Maidenhead, England to interview her. It’s a longer interview than what I would normally post, but we have so much to learn from Molly (and others like her), that I was compelled to include as much as possible from her answers. Listening to Molly was also a powerful reminder, that we often focus so much on ‘empowering’ or ‘activating’ or ‘engaging’ patients themselves, that we ignore the patient’s family and friends who play a very critical role. I feel there are so many voices currently not heard, do we need to change the way we listen?

The image below is a 360 image from my interview with Molly. 

Post from RICOH THETA. - Spherical Image - RICOH THETA

1. You were recently had a meeting at Apple's HQ in America to share your views on accessibility. Can you tell us more about how you ended up there?
The main thing was the Apple watch blog post that I wrote, and through the charity, I discuss how we can access things through tech. I have been an Apple user since my diagnosis 10 years ago, I had a Mac eventually in education to access exam papers. So when the Apple watch came out, I was unsure what it could offer, and I bought one out of curiosity, and thought I would probably return it. Accessibility has been at the cornerstone of my life since the diagnosis, and we got my website set up after Xmas 2014, and my mum encouraged me to blog, so I did.

This was the first personal blog post wrote. I think the timing of it was shortly after the launch of the Apple watch, there was a lot of bad press saying it was a toy, but I found from the perspective of sensory impairment, it opened a lot of doors for me to be more independent, I never missed a phone call because of the prominent haptics, the digital touch features were really beneficial socially when out with friends, maps was a big feature for me, navigating from A to B with the watch. When I’m out I’d rather have my phone in my bag, as it’s much safer for me, and the watch enables me to do that. My post generated quite a lot of positive reviews about the Apple watch. All of that is how after a few months, Philip W. Schiller, the senior vice president of worldwide marketing at Apple retweeted me and my website crashed due to so many hits. From there onwards, a lot of people contacted the trust. We have to remember that a lot of people can’t afford the watch, many with Usher syndrome are shuffling between jobs.

Apple had reached out to the trust to speak with me, and since we were going on a family holiday to California, they said, well come and visit us. They were genuinely interested in hearing my story, and to understand how technology can enable accessibility much more in the future. As a family, we travel as much as possible, because my sight may completely go at any time. I wrote a post about my trip to California.

2. Many people laugh at products such as the Apple watch calling it a toy or not seeing any value in using it, but it has been of value in your life. What can be done to get people looking at all possible uses of new technology?
I wasn't sure about the Apple watch, I couldn't really understand what it would do for me over the iPhone that I have relied on for years. My decision to purchase it was last minute really as a couple of my friends were getting one. It's great my friends did as I might not have got one myself as we were able to explore the features of the watch together. However, for me after a little fiddling around with my insight into my real need for accessibility I was able to really put it to the test. I believe people give the Apple watch a bit of a hard time because they don't use it in the way somebody like myself does. I have learnt how to use it to make a real difference to my life, and it’s a brilliant piece of equipment I have come to rely on. I guess because I rely on technology I have become an expert in my own way of accessing it!

3. You've got your own charity and you've spoken at places such as the Houses of Parliament and Harvard Medical School. When you were younger, did you envisage you would reach these heights?
I had no idea. I think my own struggles have made me feel passionate about making a difference, to raise awareness of ability as much as disability, share my experiences good and bad and demonstrate the importance of accessible, assistive technology. I am definitely not the person I was since being diagnosed with Usher syndrome.  

Being deaf is very different, it is not rare.  It is however challenging and there needs to be support and assistive technology.  In the area I live, support of the deaf was excellent. Usher Syndrome diagnosis brought confusion and inexperience of supporting somebody with the condition particularly in school - my education became a nightmare as I couldn't access the curriculum without modification and nobody knew what they were doing.

At my real time of need the only people I could rely on were my parents who continued to battle for me even though they also did not really understand what I was going through. I definitely get my determination and drive from them.

I've been speaking since I was 14 and making awareness videos.  It was my way of telling people what I was going through, how I felt and what I felt I needed by way of support. That's how it all began and as the years have gone by I have found my work public speaking a very useful skill and a way of reaching the larger audience with the many messages I have.

4. When it comes to accessibility and new technology, what's missing? What are the 3 top inventions that you'd like to see come in the next few years?
This is a hard question as I'm not an expert on what is possible. I believe people in design, design of everything can be improved by the inclusion of accessibility from day one. The obvious things like all websites need to be completely accessible. I rely on this sort of thing, picking up a book isn't an option. Things like hotels often terrible design, decor, carpets & wallpapers clashing and the poorest lighting. Most public places are difficult.

I cannot wait for the driverless car to be available to people like me, I'm sad I'll never experience driving but excited to think this technology is on the horizon.

5. For those living with Usher Syndrome, do they feel like their wants & needs are being heard. If not, what could we do to be better listeners?
Definitely not, there is a lack of understanding and awareness.  Usher syndrome is the most common cause of congenital deafblindness and few are experienced in dealing with it hence few get what they need. Life is a constant battle.

I'm sad that people with Usher Syndrome struggle to be understood and often live isolated lives.
Many do not work, do not socialise, and do not have access to enabling technology to allow them access to social media and if they did, they need help in learning to how to use the technology. Some use sign language which again can be isolating and can cause difficulty getting employment as communication support is often needed and hard to access as cuts to Access to Work continue. I think professionals should encourage people like myself to be vocal about their needs and to listen and take onboard their thoughts and feelings. All too often people tried to speak for me and it is not acceptable. Encouragement from the point of diagnosis is important.  

I'm fortunate my parents have always encouraged me to speak up.

6. I understand you've faced many challenges when dealing with the NHS, schools and charities/support groups, can you tell us a bit more about what happened? 
I'll answer this one at a time:

The NHS were good with my deafness diagnosis when I was little and up to my Usher diagnosis, thereafter it has been a different story. Sadly, audiologists who are often the first point of contact either know of the condition but have not treated anybody with it or worse, know nothing about it. Either way it is not helpful to the patient and needs to change. It is the same with ophthalmologists, who know about eye conditions but not much about deafblindness.  Whilst conditions are rare, there has to be professionalism in dealing with all conditions. An example of not having a decent understanding is my NHS audiologist who has known me since I was very young and has monitored my hearing with regular tests the results of which are followed up in writing. It would be great if I could read those results, which were completely inaccessible until I pointed it out that they were completely unaware of my accessibility issues. Not a thought about how I am able to access information in font 10/12 on white paper and black text!

Equally I have sat at Moorfields Eye Hospital and during the appointment, was spoken to whilst a Professor looked at his computer screen - everybody knows deaf people need to see faces to lipread and for facial expressions, even those of us with very little sight. These things should be obvious!

My experience of a mainstream school was excellent whilst I was deaf, there was great support.
Again after my Usher Syndrome diagnosis there was a lot of confusion, I was given the support of a VI teacher as well as my teacher of the deaf, and neither had supported somebody like myself.
A multi sensory teacher had to be "bought" in from a charity and yes she understood the condition but with one visit a term to educate those supporting me and myself things did not go the way they should have. This resulted in me struggling to deal with what was happening to me, I felt a burden and looked to move schools, my biggest mistake ever.

I thought going to a private school for the deaf, who were familiar with my condition I'd be with people like myself! I couldn't have been more wrong. The deaf kids were cruel, questioned my deafness as I have good speech, questioned my blindness as I appeared to see. The staff were just as bad. I boarded initially and spent hours in my dorm as I physically couldn't get from dorm to dining hall in the dark, nobody noticed or cared. Teachers didn't modify my reading material and if they did it would be on A3 paper making me feel very different. I struggled for 2 years trying to deal with my failing sight, being in denial as it often seemed easier to be that way surrounded by deaf kids telling me I was fine - it was hell.

It was made worse when I got my guidedog who did enable me to get from A to B safely then I was denied access to all social areas as my need to get from A to B was not as important as the need for a younger boy with a dog allergy to move freely around the school. 

I left with depression and a nervous breakdown at 17 years old.

That school knew all there was about Usher syndrome - they knew little, I was treated very badly.

Charities:  
Sense is the main deafblind charity, they cover/support all types of deafblindness, including deafblind with additional issues from the very young to the very old and everything in between and they are great at campaigning however I do feel people with Usher Syndrome often miss out and that’s why we set up the Molly Watt Trust.

My family travel to the USA to find out information about Usher Syndrome, there has not in the 10 years I have been diagnosed an Usher specific conference yet several for other types of deafblindness even though Usher Syndrome is the most common cause of congenital deafblindness.
Sense does a great job but there is little for those with Usher syndrome. Being an ambassador I'm always happy to help/work alongside them on any Usher projects. I am an Ambassador for Sense and happy to do what I can when I can to promote awareness of Usher syndrome, something I do as part of the work I do with the companies I have worked with. I have spoken for several charities including RP Fighting Blindness and also Berkshire Vision. I often feel on the outside looking in, I don't fit in the deaf community or the blind community and yet I feel I'm a part of both along with the Usher community and society in general.

Belonging somewhere is important to us all.

7. You wanted genetic testing, but encountered resistance from the system. Why did they think it was a bad idea for you to have genetic testing?
I wanted genetic testing when I was 15 years old, back in 2009. I had studied genetics a little at school and I wanted to know exactly who I am. My parents asked at Moorfields Eye Hospital in London the next time we were there and we were told ‘NO’ because of funding and because there is no cure for my condition. I remember feeling very upset and my parents following up the request for genetic testing with my GP.  Thankfully he understood the need and arranged for me to see a geneticist from John Radcliffe hospital in Oxford. My geneticist was brilliant (Edward Blair), he explained things in full and even provided a history lesson on where Usher syndrome came from. Some 6 months later I was told I have Usher syndrome type 2a. The importance of knowing is essential should the chance to trial anything become an option in the future. If there is any clinical testing of that gene in the future I can decide if I'd like to be involved. Being told ‘NO’ makes you feel you are a lost cause which just escalates the isolation this condition brings. Everything is a battle with this condition.

Something else to be considered is the benefits system. I have been assessed more times than I can say. Sadly people think deafblind, no hearing, no sight and no speech.  When they see me they are often very shocked and then don't believe I have any disability. On one occasion I arrived for an assessment (ATOS) and was told by the doctor he had googled Usher syndrome the night before!  He did not have a clue what I deal with on a daily basis.

8. When it comes to innovation in technology, and in particular around accessibility, what is your long term dream? 
I'd like people with disabilities to be considered from day one.  I'd like those with rare disabilities like mine to have access to all equipment they need and to be taught how to use it. I’d like them to have access to transport and benefits to enable them to work.

I think developers of everything need to understand the unique needs of all. For them to realise disabilities are not black and white. Sensory impairments are not two colours. Some with Usher are profoundly deaf (usually type 1's), the older generation might not have used any hearing aids so rely on sign language (BSL) and later tactile signing as their vision deteriorates - their communication skills and needs differ to the younger generation who have (parents chose) cochlear implants hence access to sound young and oral. My generation in the main, wear hearing aids and are oral. This is in my opinion a huge positive to accessing our world. However those who sign must always be considered regarding accessibility. And being blind is extremely rarely total darkness. There are many grey areas that are not often considered. 

In an ideal world I'd like to work/consult with developers around the world working on accessibility for all.  I'd like to be a part of moving forward with assistive technology. I believe if technology works for people like myself it will work for the older generation who's eyes and ears start to fail them as they grow older and this is very important with our ageing population.

9. Do you think there are other people like yourself around the world? Have you built your own network or is that something still to come?
I know of a few people doing similar to what I do. I have built a network which continues to grow, I am quite well known for my work around the world something I have been doing since I was 15. There is definitely more work to do and lots more to come. I hope that one day having Usher syndrome can just open up unique doors for every individual, rather than the progressive isolation and depression lack of access and awareness can give.

10. Who has inspired you the most in your life, and why?
My parents, particularly my mum and my grandparents.  They have always encouraged, supported and fought for me and I have learnt so much from them.
My mum always told my brothers and my younger sister we could be anything we wanted.  At that time she didn't realise what was around the corner for me but she still believed I would make some-thing of myself and I will, one way or another!
Before I could speak (at age 6), my Nannie, Pat, would sit me down and we'd make cards, paint and create for hours. We'd do jigsaw puzzles and watch Disney videos. My creative streaks definitely arose from those days. I was born creative and to this day use those skills. My children's books have frog characters, my Nan loved frogs. She inspired me.

11. If people want to work with you, what would they need to be offering to get your attention?
Opportunities to speak, to motivate, to innovate, to consult, to make a difference, to be heard.
My passion is accessible assistive technology and educating others.

12. If others wanted to follow in your footsteps, what would your advice be to them?
I'd encourage others to think about what is important to them, how to use their unique skill set to make a difference. Work hard and be passionate about your cause. Plus of course, never be afraid to speak up. Find ways to express yourself, in that process you eventually find yourself and also the confidence to help others.

[Disclosure: I have no commercial ties with the individuals or organisations mentioned above]

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Unexpected findings

It's fascinating to meet people in healthcare and hear them dismiss the potential value of a tool like Twitter. Despite an increasing amount of noise, I do find it a great place to listen and learn. For me personally, it's been a very powerful tool, and has taken me to places I've never imagined. One of those places is Cedars-Sinai Medical Center in Los Angeles, California. By chance, I'd come across Dr Brennan Spiegel on Twitter earlier this year, and through our online interactions, discovered that we had common interests in Digital Health, especially in the context of understanding whether these new digital tools and services being developed are actually having an impact in healthcare.

Dr Spiegel is Director of Health Services Research at Cedars-Sinai Health System, Director of the Cedars-Sinai Center for Outcomes Research and Education (CS-CORE), and Professor of Medicine and Public Health in Residence at UCLA. I was particularly intrigued by the work he does at CS-CORE, where he oversees a team that investigates how Digital Health technologies, including wearable biosensors, smartphone applications, and social media, can be used to strengthen the patient-doctor bond, improve outcomes, and save money. So whilst I was out in California, I popped into Cedars-Sinai Medical Center to spend some time with him and his team to understand their journey so far in Digital Health.

With Dr Spiegel and the CS-CORE team - the picture was taken remotely using Dr Spiegel's Apple watch! 

With Dr Spiegel and the CS-CORE team - the picture was taken remotely using Dr Spiegel's Apple watch! 

To give you some context, Cedars-Sinai Medical Center is a non-profit, has 958 beds, over 2,000 doctors and 10,000 employees. It's also ranked among the top 15 hospitals in the United States, and is ranked first in Los Angeles by US News and World report. In addition to Dr Spiegel, I met with Dr Christopher Almario, Garth Fuller, and Bibiana Martinez

What follows is a summary of the Q&A that took place during my visit. 

1. What is the big vision for your team?
"The big vision is value of care. Value is our true north. It puts patients first while also reminding us to be judicious about the healthcare resources we use. Take Cedars-Sinai, a traditional volume based center of excellence. How do we transform our hospital, that has excelled in the fee-for-service healthcare environment for so long, and transform it into a value-based innovation center while maintain our top-notch quality of care? It seems like a magic trick to transform from volume to value in healthcare. How do we do it at scale, and how do we keep people out of hospitals when healthcare systems have  been designed to take people in? Our mission is to figure out how to do that. This could be a blueprint for how other health systems could do this and which doctors could do this. How do we align incentives? How do we create a Digital Health strategy that works within the existing clinical workflow? How might we use an E-coordination hub? These are all open questions ready for rigorous research. 

What does innovation mean at Cedars-Sinai? We see ourselves as a hub of innovation and are now developing a new 'Value Collaboratory' under the guidance of our visionary leader, Scott Weingarten, who directs Clinical Transformation at Cedars-Sinai. We offer a set of tools to help value-based innovators make a difference. We're going to be doing a lot over the next 5 years. Digital Health is just one small part of that. The Value Collaboratory will be the centre for ideas within Cedars. For example, if innovators seek internal funding for a project, then they can work with the collaboratory to refine their idea, evaluate its health economic potential, and create a formal case for its support."

2. Tell me more about the team, what types of people work in CS-CORE
"There are 12 of us in CS-CORE, and we have a combination of health system and statistical expertise. We have social scientists, behavioural scientists, mobile health experts and more. It's a multi-disciplinary team. For example, Dr Almario is a gastroenterologist, who has always been interested in health services research, and was awarded a career development award from the American College of Gastroenterology, which is very rare, in Digital Health to pursue research. Garth Fuller with a background in health policy and management has been working with us for the last 5 years and has a strong interest in medication adherence, and conducts research to understand how we can show that 'Beyond the Pill' strategies in the pharma industry are working. Bibiana Martinez with her background in Public Health is hands on, and works with our patients. Bibiana helps filter the real world barriers faced in Digital Health research and bring them back to our team. We have an all-hands-on-deck research crew."

3. What has surprised you during your research in Digital Health?
"We've had some unexpected findings. For example, we had a patient who reported less pain, and our original expectation was that the data from her wearable would report that she had been walking more, as the pain was subsiding. However, that wasn't the case, as her pain decreased, she was walking less. It turns out the patient was an author, and being free of pain meant she could sit for hours on end and finish writing her book. Completing the book was the outcome that mattered to the patient. What should we do when a patient's steps fall from 1,500 a day to almost 0? Do we give them a call, simply because we perceive it as unhealthy? How often does your doctor ask you what your goal is for your visit? I show these charts of pain vs steps when I teach my health analytics class at UCLA, to challenge how my students think."

4. How else have your assumptions about how patients use Digital Health tools been challenged?
"In healthcare, we often make a lot of assumptions about the needs and wants of patients. We have been fitting Virtual Reality goggles with hospital patients, so that we can transport them from their hospital bed to far away places such as Iceland. One patient asked if we could transport him somewhere more tropical, as the hospital is cold, and having a VR experience in Iceland made him feel even colder. 

We had an instance where a patient wasn't able to charge her Fitbit. We tried to explain over the phone, but it actually required a house visit in order for this patient to understand how to charge the device. We thought we could put sensors around the ankle joint of patients to measure steps, and some patients felt like they were under house arrest when wearing our sensor on their ankle."

5. What are some of the most exciting projects you're working on today?
"Well, we create our own technologies and sensors. We find out soon if our first sensor is approved by the FDA. Also, with the vision of our hospital Enteprise Information Services (EIS) team, our hospital's EHR is now connected to Apple's HealthKit, it's a great achievement, we now have 750 people pouring in real-time sensor data into our EPIC Electronic Health Record. We've also developed My GI Health, a patient provider portal which by gathering information on symptoms in advance of a visit to the doctor, helps us learn more about a patient's GI symptoms. The computer doesn't forget to ask questions, but sometimes the doctor forgets to ask questions. Although much of our research is in GI, we are working across healthcare. We are now building a version of My GI Health for rheumatology, for example. We are also interested in testing whether the first visit to a specialist doctor should be virtual or in person? What would patients & doctors actually want? We are putting a study design together now that will compare both types of visits."

6. What are some of the challenges you face in your research?
"The research we do is often challenging for the IRB because it’s so different.  We work closely with our IRB to explain the nature of our work. As more academic groups conduct Digital Health research, it will be important that medical centers develop regulatory expertise around this type of work.

There is also an urgency to test quickly, fail quickly and succeed quickly. What we need is a high level discussion to understand what risk means in the context of Digital Health research. Can we generate evidence faster?"

7. What are you doing to help ensure that no patient gets left behind in Digital Health?
"We are soon going to start a community-based study in partnership with African American churches in Los Angeles. We will work with these 'mega churches,' which have up to 10,000 congregants, and will distribute healthy living experiences delivered by Virtual Reality goggles using Google Cardboard.  We will also use an app for obesity and diabetes management. We observe that many families from minority backgrounds are mobile first, and we see that the next digital divide is opening up over mobile. Healthcare isn't built for mobile. We are also researching the mobile usability of hospital websites across America."

8. What message would you like to share with others also on the same journey as you?
"Listen to the patients, get used to Digital Health being dirty and difficult, it may be harder than you think. We can say that with some authority now, that it can sound easy, but in reality it's been very hard. Our team has developed devices and applied them directly to patients; what happens next is often unexpected and challenges our assumptions. Digital Health is really hard to do. We have to focus on the how of Digital Health. We understand why it's valuable, but not as much about how we will be doing it. Value is another big theme - we need to improve outcomes and reduce costs of care. It takes time to do it right. We also try to never forget the end user, both the physician and the patient. 

This work is 90% perspiration, and 10% inspiration. You need to have a sense of humor to do this because, you’re going to get a lot of unexpected bumps and failures. It’s a team sport to figure it out. Defining the problem in terms of the health outcomes and costs is the key, and generating a solution that has value to patient and providers is paramount.. 

Finally, the 'cool test' is so seductive. Don’t been fooled by the 'cool test' in Digital Health. What may be cool to us may not be cool to the patient. Don’t be seduced by the 'cool test' in healthcare."

I really enjoyed my time with Dr Spiegel and his team, not only because of the types of research they are doing, but also because of their vision, values and valor. Their unexpected findings after putting new devices on patients has subsequently made me think at length about health outcomes. I was reminded about the human factors in healthcare, and that both patients and doctors don't always do what we expect them to do. I'm glad CS-CORE are not just thinking from the perspective of medicine, but through the lens of public health too, and how to ensure that no patient is left behind. I'm not the only one who is admires their work. David Shaywitz, has recently written a post about the research conducted by CS-CORE, and mentions, "they are the early adopters, the folks actually in the arena, figuring out how to use the new technology to improve the lives of patients." 

Dr Spiegel did admit they've been under the radar so far, focusing on putting “one foot in front of the other” in research mode while working with a wide variety of partners from industry and academia. The team is also looking for collaborators who want to road test their digital health solutions in a “real world” laboratory of a large health system. Their team is equipped to conduct stem-to-stern evaluations with an eye to rigorous research and peer-reviewed publications. I see that Dr Spiegel is one of the speakers at the Connected Health Symposium later this week, as part of a panel discussion on Measuring Digital Health Impact & Outcomes. I won't be there but I hope to be part of the live Twitter discussion. 

Since my visit, I note that Cedars-Sinai and Techstars have partnered to launch a Digital Health focused accelerator. What does this accelerator aim to do? The website states, "We are looking for companies transforming health and healthcare.  Companies that are creating hardware, software, devices and/or services that empower the patient or healthcare professional to better track, manage, and improve health and healthcare delivery are eligible to apply." Techstars is one of the world's most highly rated startup accelerator programs, the other being Y Combinator. It's fascinating to see the marriage of two very different worlds, and who knows what unexpected findings will result from this partnership. In the 21st century, when we think of radically different models of care, startups and emerging technologies, large traditional hospital systems are not the first place we think of looking for them. Maybe the lesson here for large healthcare institutions is to "disrupt or be disrupted?"

In the world of Digital Health, the trend of moving healthcare out of the hospital into the home, virtual visits and telemedicine may be causing concern to hospital executives. If all of these converging technologies (often coming from startups) really are effective and become widely adopted, then surely we will need smaller hospitals, or perhaps in certain scenarios, we may one day not need to have that many hospitals at all? Perhaps the hospitals that survive and thrive in the 21st century will be the ones that boldly explore the unknown in Digital Health, rather than the ones that hide and hope that the world of Digital Health will just be a passing fad? 

“It is the tension between creativity and skepticism that has produced the stunning and unexpected findings of science.” - Carl Sagan

[Disclosure: I have no commercial ties to any of the individuals or organizations mentioned in this post]

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Data or it didn't happen

Today, there is incredible excitement, enthusiasm and euphoria about technology trends such as Wearables, Big Data and the Internet of Things. Listening to some speakers at conferences, it often sounds like the convergence of these technologies promises to solve every problem that humanity faces. Seemingly, all we need to do is let these new ideas, products and services emerge into society, and it will be happy ever after. Just like those fairy tales we read to our children. Except, life isn't a fairy tale, neither is it always fair and equal. In this post, I examine how these technologies are increasingly of interest to employers and insurers when it comes to determining risk, and how this may impact our future. 

Let's take the job interview. There may be some tests the candidate undertakes, but a large part of the interview is the human interaction, and what the interviewer(s) and interviewee think of each other. Someone may perform well during the interview, but turn out to under perform when doing the actual job. Naturally, that's a risk that every employer wishes to minimise. What if you could minimise risk with wearables during the recruitment process? That's the message of a recent post on a UK recruitment website,  "Recruiters can provide candidates with wearable devices and undertake mock interviews or competency tests. The data from the device can then be analysed to reveal how the candidate copes under pressure." I imagine there would be legal issues if an employer terminated the recruitment process simply on the basis of data collected from a wearable device, but it may augment the existing testing that takes place. Imagine the job is a management role requiring frequent resolution of conflicts, and your verbal answers convince the interviewer you'd cope with that level of stress. What if the biometric data captured from the wearable sensor during your interview showed that you wouldn't be able to cope with that level of stress. We might immediately think of this as intrusive and discriminatory, but would this insight actually be a good thing for both parties? I expect all of us at one point have worked alongside colleagues who couldn't handle pressure, and their reactions caused significant disruption in the workplace. Could this use of data from wearables and other sensors lead to healthier and happier workplaces? 

Could those recruiting for a job start even earlier? What if the job involved a large amount of walking, and there was a way to get access to the last 6 months of activity data from the activity tracker you've been wearing on your wrist every day? Is sharing your health & fitness data with your potential employer the way that some candidates will get an edge over other candidates that haven't collected that data? That assumes that you have a choice in whether you share or don't share, but what if every job application required that data by default? How would that make you feel? 

What if it's your first job in life, and your employer wants access to data about your performance during your many years of education? Education technology used at school which aims to help students may collect data that could tag you for life as giving up easily when faced with difficult tasks. The world isn't as equal as we'd like it to be, and left unchecked, these new technologies may worsen inequalities, as Cathy O’Neil highlights in a thought provoking post on student privacy, “The belief that data can solve problems that are our deepest problems, like inequality and access, is wrong. Whose kids have been exposed by their data is absolutely a question of class.”

There is increasing interest in developing wearables and other devices for babies, tracking aspects of a baby, mainly to provide additional reassurance to the parents. In theory, maybe it's a brilliant idea, with no apparent downsides? Laura June doesn't think so, She states, "The merger of the Internet of Things with baby gear — or the Internet of Babies — is not a positive development." Her argument against putting sensors into baby gear is that it would increase anxiety levels in parents, not reduce them. I'm already thinking about that data gathered from the moment the baby is born. Who would own and control it? The baby, the baby's parents, the government or the corporation that had made the software & hardware used to collect the data? Furthermore, what if the data from the baby could impact not just access to health insurance, but the pricing of the premium paid by the parents to cover the baby in their policy? Do you decide you don't want to buy these devices to monitor the health of your newborn baby in case one day that data might be used against your child when they are grown up? 

When we take out health and life insurance, we fill in a bunch of forms, supply the information needed for the insurer to determine risk, and then calculate a premium. Rick Huckstep points out, "The insurer is not able to reassess the changing risk profile over the term of the policy." So, you might be active, healthy and fit when you take out the policy, but what if your behaviour changes and your risk profile changes during the term of the policy? This is the opportunity that some are seeing for insurers to use data from wearables to determine how your risk profile changes during the term of the policy. Instead of a static premium at the outset, we have a world with dynamic and personalised premiums. Huckstep also writes, "Where premiums will adjust over the term of the policy to reflect a policyholder’s efforts to reduce the risk of ill-health or a chronic illness on an on-going basis. To do that requires a seismic shift in the approach to underwriting risk and represents one of the biggest areas for disruption in the insurance industry."

Already today, you can link your phone or wearable to Vitality UK health insurance, and accumulate points based upon your activity (e.g. 10 points if you walk 12,500+ steps in a day). Get enough points and exchange them for rewards such as a cinema ticket. A similar scheme has also launched in the USA with John Hancock for life insurance

Is Huckstep the only one thinking about a radically different future? Not at all. Neil Sprackling, Managing Director of Swiss Re (a reinsurer) has said, “This has the potential to be a mini revolution when it comes to the way we underwrite for life insurance risk." In fact, his colleague, Oliver Werneyer, has an even bolder vision with a post entitled, "No wearable device = no life insurance," in which he believes that in 5 to 10 years time, you might find not be able to buy life insurance if you don't have a wearable device collecting data about you and your behaviour. Direct Line, a UK insurer believe that technology is going to transform insurance. Their Group Marketing Director, Mark Evans, has recently talked about technology allowing them to understand a customer's "inherent risk." Could we be penalised for deviating away from our normal healthy lifestyle because of life's unexpected demands? In this new world, if you were under chronic stress because you suddenly had to take time off work to look after a grandparent that was really sick, would less sleep and less exercise result in a higher premium next month on your health insurance? I'm not sure how these new business models would work in practice. 

When it comes to risk being calculated more accurately based upon this stream of data from your wearables, surely it's a win-win for everyone involved? The insurers can calculate risk more accurately, and you can benefit from a lower premium if you take steps to lower your risk. Then there are opportunities for entrepreneurs to create software & hardware that serves these capabilities. Would the traditional financial capitals such as London and New York be the centre of these innovations? 

One of the big challenges to overcome, above and beyond established data privacy concerns, is data accuracy. In my opinion, these consumer devices that measure your sleep & steps are not yet accurate and reliable enough to be used as a basis for determining your risk, and your insurance premium. Sensor technology will evolve, so maybe one day, there will be 'insurance grade' wearables that your insurer will be able to offer you. These would be certified to be accurate, reliable and secure enough to be used in the context of being linked to your insurance policy. In this potential future, another issue is whether people will choose to not take insurance because they don't want to wear a wearable, or they simply don't like the idea of their behaviour being tracked 24/7. Does that create a whole new class of uninsured people in society? Or would their be so much of a backlash from consumers (or even policy makers) to this idea of insurers accessing this 24/7 stream of data about your health, that this new business model never becomes a reality? If it did become a reality, would consumers switch to those insurers that could handle the data from their wearables? 

Interestingly, who would be an insurer of the future? Will it be the incumbents, or will it be hardware startups that build insurance businesses around connected devices? That's the plan of Beam Technologies, who developed a connected toothbrush (yes, it connects via Bluetooth with your smartphone and the app collects data about your brushing habits). Their dental insurance plan is rolling out in the USA shortly. Beam are considering adding incentives, such as rewards for brushing twice a day. Another experiment is NEST partnering with American Family Insurance. They supply you a 'smart' smoke detector for your home, which "shares data about whether the smoke detectors are on, working and if the home’s Wi-Fi is on." In exchange, you get 5% discount off your home insurance. 

Switching back to work, employers are increasingly interested in the data from employee's wearables. Why? Again, it's about a more accurate risk profile when it comes to health & safety of employees. Take the tragic crash of the Germanwings flight this year, where it emerges the pilot deliberately crashed the plane, killing 150 passengers. At a recent event in Australia, it was suggested this accident might have been avoided if the airline were able to monitor stress in the pilot using data from a wearable device.

What other accidents in the workplace might be avoided if employers could monitor the health, fitness & wellbeing of employees 24 hours a day? In the future, would a hospital send a surgeon home because the data from the surgeon's wearable showed they had not slept enough in the last 5 days? What about bus, taxi or truck drivers that could be monitored remotely for drowsiness by using wearables? Those are some of the use cases that Fujitsu are exploring in Japan with their research. Conversely, what if you had been put forward for promotion to a management role, and a year's worth of data from your wearable worn during work showed your employer that you got severely stressed in meetings where you had to manage conflict? Would your employer be justified in not promoting you, citing the data that suggested promoting you would increase your risk of a heart attack? Bosses may be interested in accessing the data from your wearables just to verify what you are telling them. Some employees phone in pretending to be sick, to get an extra day off. In the future, that may not be possible if your boss can check the data from your wearable to verify that you haven't taken many steps as you're stuck in bed at home. If you can't trust your employees to tell the truth, do you just modify the corporate wellness scheme with mandatory monitoring using wearable technology?

If it's possible for employers to understand the risk profile for each employee, would those under pressure to increase profits, ever use the data from wearables to understand which employees are going to be 'expensive', and find a way to get them out of the company? Puts a whole new spin on 'People Analytics' and 'Optimising the workforce'. In a compelling post, Sarah O'Connor shares her experiment where she put on some wearables and shared the data with her boss. She was asked how it felt to share the data with her boss, "It felt very weird, and actually, I really didn't like the feeling at all. It just felt as if my job was suddenly leaking into every area of my life. Like on the Thursday night, a good friend and colleague had a 30th birthday party, and I went along. And it got to sort of 1 o'clock, and I realized I was panicking about my sleep monitor and what it was going to look like the next day." We already complain about checking work emails at home, and the boundaries between work and home blurring. Do you really want to be thinking about how skipping your regular session at the gym on a Monday night would look to your boss? Devices that will betray us can actually be a good thing for society. Take the recent case of a woman in the USA who reported being sexually assaulted whilst she was asleep in her own home at night. The police used the data from the activity tracker she wore on her wrist to prove that at the time of the alleged attack, she was not asleep but awake and walking. On the other hand, one might also consider that those with malicious intent could hack into these devices and falsify the data to frame you for a crime you didn't commit. 

If these trends continue to converge, I see enterprising criminals rubbing their hands with glee. A whole new economy dedicated to falsifying the stream of data from your wearable/IoT device to your school, doctor, insurer or employer, or whoever is going to be making decisions based upon that stream of data. Imagine it's the year 2020, you are out partying every night, and you pay a hacker to make it appear that you slept 8 hours a night. So many organisations are blindly jumping into data driven systems with the mindset of, 'In data, we trust,' that few bother to think hard enough about the harsh realities of real world data. Another aspect is bias in algorithms using this data about us. Hans de Zwart has written an illuminating post, "Demystifying the algorithm: Who designs our life?" Zwart shows us the sheer amount of human effort in designing Google Maps, and the routes it generates for us, "The incredible amount of human effort that has gone into Google Maps, every design decision, is completely mystified by a sleek and clean interface that we assume to be neutral. When these internet services don’t deliver what we want from them, we usually blame ourselves or “the computer”. Very rarely do we blame the people who made the software." With all these potential new algorithms classifying our risk profile based upon data we generate 24/7, I wonder how much transparency, governance and accountability there will be? 

There is much to think about and consider, one of the key points is the critical need for consumers to be rights aware. An inspiring example of this, is Nicole Wong, the former US Deputy CTO, who wrote a post explaining why she makes her kids read privacy policies. One sentence in particular stood out to me, " When I ask my kids about what data is collected and who can access it, I am asking them to think about what is valuable and what they are prepared to share or lose." Understanding the value exchange that takes place when you share your data with a provider is critical step towards being able to make informed choices. That's assuming all of us have a choice in the sharing of our data. In the future, when we teach our children how to read and write English, should they be learning 'A' is for algorithm, rather than 'A' is for apple? I gave a talk in London recently on the future of wearables, and I included a slide on when wearables will take off (slide 21 below). I believe they will take off when we have to wear them or when we can't access services without them. Surgeons and pilots are just two of the professions which may have to get used to being tracked 24/7.

Will the mantra of employers and insurers in the 21st century be, "Data or it didn't happen?"

If Big Data is set to become one of the greatest sources of power in the 21st century, that power needs a system of checks and balances. Just how much data are we prepared to give up in exchange for a job? Will insurance really be disrupted or will data privacy regulations prevent that from happening? Do we really want sensors on us, in our cars, our homes & our workplaces monitoring everything we do or don't do? Having data from cradle to grave on each of us is what medical researchers dream of, and may lead to giant leaps in medicine and global health. UNICEF's Wearables for Good challenge could solve everyday problems for those living in resource poor environments. Now, just because we might have the technology to classify risk on a real time basis, do we need to do that for everyone, all the time? Or should policy makers just ban this methodology before anyone can implement it? Is there a middle path? "Let's add in ethics to technology" argues Jennifer Barr, one of my friends who lives and works in Silicon Valley. Instead of just teaching our children to code, let's teach them how to code with ethics. 

There are so many questions, and still too few places where we can debate these questions. That needs to change. I am speaking at two events in London this week where these questions are being debated, the Critical Wearables Research Lab and Camp Alphaville. I look forward to continuing the conversation with you in person if you're at either of these events. 

[Disclosure: I have no commercial ties to any of the individuals or organisations mentioned in the post]

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The Apple watch is dead. Long live the Apple watch.

I've had the Apple watch for just over a week now, and in this post, I'd like to share my experience and my thoughts about the future. I've examined many aspects of the functionality of the device, but also its potential for playing a role in health. It appears to be a device that polarises opinions, before it has even hit the market. I've met people who ordered one, not because they like it, or because they want some kind of 'smartwatch', but simply because it is a new product from Apple. Others have told me they would never purchase such a watch, because of the cost, and also they don't see a use for it given they already have an iPhone. 

There have been multiple attempts at 'smartwatches' to win over consumers. I use the term, 'smartwatch' very loosely, simply to group these wearables together. I'll be sharing more in this post about why these watches are still not particularly smart. Last summer, Android Wear launched, and I wrote about my initial experience and thoughts on health & social care. Android Wear hasn't been as successful as Google had hoped. I've actually been using a number of 'smartwatches', and for me, the closest existing rival to the Apple watch is the Samsung Gear S, which released late 2014, and didn't sell very well (I only know one person on Earth who has also purchased one). It overlaps in functionality with the Apple watch, with two big differences. It has its own SIM card inside the watch, with its own phone number, and it only works with an Android phone. I've been using the Gear S since November 2014, and the user experience is very different. Whilst the Samsung seemed to have just tried to miniaturise a computer/phone into a watch, It is clear to me that Apple have put considerably more thought into the design of the watch. A clear example of this difference in design thinking is the fact that the Gear S offers both a QWERTY keyboard on the watch such as when you write a text message, and also a web browser. Just because it is technically possible to do something on a device as small as a watch, doesn't mean it should be included as a feature. Thankfully, Apple have not added those two features. 

Some people say to me if the Apple watch is not replacing the iPhone, then what's the point? Why use an app on a tiny screen on your wrist when you could just use the same app on your iPhone? A perfectly sensible question to ask. To answer, I'll give you a real life example of why having the Apple watch made me feel safer as I navigated the streets of a foreign city at night. I flew from London to Milan on Tuesday evening, and after dinner in the city, I wanted to walk back to my hotel. I didn't know the route, so I used my Apple watch. I opened the Maps app, dictated the name of the hotel (which the watch recognised despite me being on a busy street), and chose the walking (vs driving) option for navigation. Why did the Apple watch make me feel safer walking back to my hotel at night? Well, you can keep your iPhone in your pocket, and you don't even need to glance at your Apple for instructions on when to turn left or right. You just walk normally, except that when you do have to turn left or right, the watch 'taps' your wrist in different ways. To anyone observing you, they wouldn't know you had an expensive phone and watch. Bear in mind that GPS is not always accurate, especially in cities with tall buildings. On one walk in London, the watch tapped to indicate that I turn right, into a clothing store. The street I actually had to turn right into was 50 yards up ahead. However, I'm not sure if the driving mode on the watch would be safe. Would you really want to navigate using your watch whilst you drive? 

One of the standard notifications is to alert you once an hour to stand up and move. Sounds like a useful concept given how many of us work in jobs that keep us sitting in a chair all day long. These notifications are simple, not smart, as they appear at the strangest of times. You'd think the notifications could have made use of data from sensors in your watch to be more relevant and timely.

Using the Gear S has changed how I use my Android phone. I typically keep my phone on silent, and use the Gear S to notify me of emails/calls etc. I find it particularly useful if I'm charging my phone at home or in the office, and I want to wander away from the phone, without missing any notifications. All these devices need to be paired with your phone via Bluetooth in order to work. Since the Gear S has its own SIM card, as soon it loses the Bluetooth connection with my phone, it forwards calls from the phone to the Gear S. So, if I left the phone at home to visit the gym, and someone rang my phone's number, the call would be forwarded to the Gear S. Since the Gear S has a speaker you can answer the call (or alternatively, you can connect the Gear S with bluetooth earphones, which is a lot better). Incidentally, I found the speaker on the Apple watch is competent, but not as loud as the speaker on the Gear S. 

When the Apple watch loses the Bluetooth connection with the iPhone because you've walked out of the house, the watch isn't completely useless. You can use it to track your workouts and it will continue to monitor your activity (move, stand & exercise). You can listen to music that's stored on the watch, and use Apple Pay to buy stuff (Apple Pay only available in the USA right now). Oh, and you can still use it as a watch to tell the time, set alarms and use the stopwatch feature! If you're at home or in the office and you wander around so that the Bluetooth connection is lost between your iPhone and the Apple watch, if your iPhone is also connected to a wifi network, you can also use Siri on the watch & send and receive iMessages. 

Which menu of apps do you prefer? Gear S (left) or Apple Watch (right)?

Which menu of apps do you prefer? Gear S (left) or Apple Watch (right)?

When it comes to learning to use the Apple watch, it should be intuitive, given Apple's previous products. Tell me something, if the Apple watch was intuitive, why would the user guide be nearly 100 pages long? (For comparison, the manual for the Gear S is also of a similar length!)

For example, the Apple watch features something called 'Force Touch', which can distinguish between you tapping the screen and pressing the screen. Pressing the screen brings up new menus or options within apps. For example when you open up the Maps app, in order to search for a destination, you have to press firmly on the screen, and two options then appear, "Search" & "Contacts." If you were unaware of "Force Touch" or had not read the User Guide, you might be bamboozled. When the Apple watch has a bunch of notifications you wish to clear, you have to press firmly on the screen for a "Clear All" option to appear. On the Gear S, when browsing the notifications, you simply swipe up to see the "Clear All" option. It seems the user interface on the Apple watch leaves many users confused, leading to 9to5mac creating a quick start user guide. Whilst browsing and choosing the apps on the Apple watch, I sometimes find myself starting the wrong app, because the screen and the icons are so small. In that respect, I do prefer the larger screen and traditional menu of the Gear S. For clarity, I purchased the larger of the two Apple watches, 42mm, rather than the 38mm. I do wonder how difficult or easy it would be for someone with Arthritis to use the Apple watch (or any wearable device with a touch screen)?

When it comes to health, one of the first apps I tried was one called Sickweather. It uses crowdsourced data for forecasting and mapping sickness. It is the same notification that would appear on the iPhone, but if you have the watch, it will appear there instead. Now it might seem of limited or no value to many, but for some people, it is useful. After I put out the tweet showing how the cough alert looked, it led to an interaction on Twitter with a guy called Jarrod, who has Cystic Fibrosis, and said the app would be useful for him. Sickweather has a Sickweather score that is only available on the Apple watch. 

I also tried an app called DocNow that provides instant access to doctors 24/7 from the Apple watch. A tap on the watch will initiate a HD video call with a doctor via the iPhone. Unfortunately, being in England, it didn't work for me when I tried it. That's being resolved I believe. 

There are also a number of apps on the watch for Medication reminders. Medication reminders on a watch are not new, I tested the MediSafe version for Android Wear last year. For the Apple watch, I tested an app from WebMD, and one good thing I noticed was it even includes a picture of the medication you are supposed to take. In the WebMD app on the iPhone, you can even use your own picture, if your pills look different from the stock image. It all sounds great, doesn't it? However, once I shared via Twitter, I got valuable feedback. Is the screen size too small for older people and/or people with poor eyesight? So, rather than on a watch, perhaps medication reminders for older people taking multiple medications are better delivered via a personal companion robot? (more on that in a future post as I have some updates in that arena) 

The Deadline app that shows my predicted life expectancy

The Deadline app that shows my predicted life expectancy

Another interesting app I tested was Deadline. This is an app that asks you questions about your lifestyle, and family history as well as reading some of your health data from the iPhone to then determine your life expectancy. It displays it on the watch as a tip on how to improve your life expectancy. The science behind this app is probably unvalidated, but as a concept, but it does make me wonder. In the future, If the science was accurate, and the app was validated, how comfortable would you feel with tailored health advice via your watch that was based upon the state of your health there and then? Would it be too intrusive if your watch nudged you to eat a salad instead of a burger?

The Apple watch searches for Bluetooth devices

The Apple watch searches for Bluetooth devices

Within the Bluetooth menu on the watch, I found that it shows two types of devices it can connect to, devices & health devices. I understand that it is possible to pair the watch to an external heart rate monitor, if you wanted to use that to monitor your heart rate rather than the sensor within the watch itself (I plan to test this connectivity). It is not clear what other health devices you could connect to the watch, but its a feature worth keeping track of. 

The watch comes with a sensor that will normally record your heart rate every 10 minutes, and store that data in the health app on the iPhone. That sensor could also act as a pulse oximeter, allowing measurement of oxygen content of your blood. However, this feature has not been activated yet. 

Now if you choose the Workout app, and select one of the workouts (such as Outdoor walk or Indoor Cycle), it will track your heart rate continuously. I did try that out with an Outdoor walk, and I also compared how the Gear S was measuring my heart rate compared with the Apple watch. Bear in mind that the positioning of both devices may have affected the results, and I'll have to repeat the test, with the devices in different positions, on different arms. 

HR on Gear S almost double that of Apple watch (I was sitting on a bench as a I rested during my walk) 

HR on Gear S almost double that of Apple watch (I was sitting on a bench as a I rested during my walk) 

How do steps/distance walked compare against other devices? Well, this picture illustrates the challenge with these consumer devices. For the picture, the Apple watch & Gear S were worn on my left hand, and the Microsoft Band was worn on my right hand. Same walk, different devices, different results. Note, I entered my age, gender, height and weight were entered exactly the same in the app for each device. Why does the Apple watch show more steps walked than the Microsoft band, but a longer distance? Why does the Gear S show more steps & more distance but fewer calories than the Apple watch? BTW, since the Apple Watch doesn't track sleep, I'm using the Microsoft band to track my sleep. Will we ever have one device that can serve every purpose or do we have multiple wearables?

Apple Watch (left), Microsoft Band (top right), Gear S (bottom right) 

Apple Watch (left), Microsoft Band (top right), Gear S (bottom right) 

Health app on my iPhone

Health app on my iPhone

I was curious about the data from my watch being recorded in the Health app on my iPhone, and I found something quite puzzling. The Outdoor walk I had selected on the watch, had captured my heart rate continuously but something didn't make sense.

The app shows 6 entries for 8.21am, two of them for 128bpm, two more for 127bmp, one at 78bpm, and one at 69bpm. The date stamp only shows the hour and minute not the second. How will it be possible to make sense of this data in any analysis if I have 6 different heart readings at 8.21am? (Update: 18th May - I got a response from Apple about this issue. They told me the watch will measure HR multiple times in a minute, but that the data in the health app is only in hours and minutes.)

Now that my heart rate is being captured with the watch, could that data ever be used with other personal data to tailor advertising messages to me? I'm outside Starbucks, having not slept well, woken up late, missed by usual bus to work, and voila, my watch gets a coupon offering me a discount off coffee within the next 10 minutes at THAT particular Starbucks. Would that be creepy or cool? I envisioned this scenario after reading a brilliant post by Aaron Friedman, on the future of search engines, which he says is all about context. Delivering information to your watch at the right place and the right time was the plan behind Google's Android Wear. A great idea, but their implementation last year was not optimal. Additionally, many of the first Android Wear watches didn't look very fashionable either. Their new strategy for Android Wear in response to the Apple watch may win them more consumers, but I'm not convinced.

I have been examining the role of the Apple watch in health primarily from a consumer perspective. What about people working in healthcare? Is the watch helpful for them? Well, Doximity, a professional network for physicians in the USA thinks so. An article about their app for the watch highlights, "They think the Apple Watch can enable medical professionals to share information easily, securely, and quickly — and perhaps most importantly, hands-free."

There is a hospital in the USA, Ochsner Health System, that is trialling the use of the Apple watch with patients with high blood pressure. Then you've got one of the biggest hospitals in Los Angeles, Cedars-Sinai has now added support for Apple's HealthKit, allowing data from a patient's phone to be added to their medical record. That's where I see the biggest advantage of the Apple watch over any other makers of smartwatches.  

  • Interface - Whilst not perfect, and probably too complex, once you get the hang of it, the Apple watch is a more polished user experience than its current rivals 
  • Integration - Whilst I capture health information with the Gear S, it doesn't really go anywhere from the Samsung S-health app. This is where Apple really shines. 
  • Ecosystem - With around 3,500 apps already available for the Apple watch (including many popular iPhone apps), and around 1,000 apps for the Samsung Gear watches, once again, Apple are ahead. I downloaded very few apps for the Gear S, as I didn't find many good ones.
The Bump is an app for pregnant women - this is the screen you see for several seconds as the app loads 

The Bump is an app for pregnant women - this is the screen you see for several seconds as the app loads 

Since I've mentioned apps, thanks to Tyler Martin for reminding me to mention some of the issues I faced with installing & using apps on the Apple watch. Maybe it is because the ecosystem is so new, but the apps can be buggy. You expect a tiny device like a watch to respond swiftly, it is not like a computer with a hard drive. Yet, there are times, when the watch does take a relatively long time to install/open apps, or the app crashes whilst you're using it. Those are the moments when you feel like you've purchased a product that is still a work in progress. I would hope these bugs get ironed out as more people start using these apps and report issues to the developers. The source of these problems may be that developers have had to create apps for the watch without actually having access to the watch prior to launch. Maybe those consumers waiting for Apple Watch 2.0 or 3.0 are the sensible ones?

Dr Eric Topol highlights in a tweet how the Apple watch may be of benefit to diabetics wishing to monitor their blood glucose levels when using a Dexcom CGM.

One thing I was reminded of this week was that we might have the latest technology such as an Apple watch, but the infrastructure around us was designed for a different era. For example, I travelled from London to Milan and Paris this week with British Airways. As a result, I was able to use their mobile boarding pass on my Apple watch. I checked-in online using the BA app on my iPhone, and then retrieved my boarding pass, which I added to Passbook. The passes in Passbook on your iPhone get transferred to Passbook on your Apple watch, so you could even board a plane using your Apple watch alone, if your phone was off or left at home. There are two parts to the boarding pass on the watch, one is the text information about your flight and the other part is the QR code which airport machines will scan. On the iPhone, you'd see both parts at once, on the watch, due to the small screen, you have to swipe up to see the QR code.

Instead of waiting by the screens in departures at Heathrow airport, I wandered around the airport at my leisure, and got a notification on my watch when the gate for my flight was announced. However, when I was at the gate, and was asked for my boarding pass, I had to take the watch off my wrist so the boarding pass could be scanned. The machine which scans boarding passes had been designed to scan paper boarding passes, and so didn't have a gap large enough to accommodate someone's arm wearing a watch. Where I wished I had a paper boarding pass was at Milan airport, where on departure, passport control wanted to see my boarding pass. The officer was in a kiosk fronted by a glass screen, and I had to take off my watch and slide it across the counter. However, when I did that, the screen of the watch went off, and as I leaned over the counter to tap the screen for the boarding pass to reappear, a bunch of notifications pinged to the watch, which then confused the officer in the kiosk. I had to then clear all the notifications from the watch, open Passbook on the watch, and bring up the boarding pass again.

When you Apple watch notifies you, it uses the new 'Taptic engine' to tap your wrist rather than the traditional vibration I get on devices such as the Gear S and Microsoft Band. I found these taps to be too weak. After reading the User Guide, I found within the watch, a menu that offered 'Prominent Haptic', which I switched on. It is better than before, but I still prefer the more noticeable vibration from the Gear S and Microsoft Band. 

There are some features of the Apple watch which seem rather frivolous. One of them is that you can press both buttons on the side of the watch, and a screenshot of the watch's display is then added to your iPhone's photo library.

You're probably wondering about battery life. Well, Apple claim 18 hours, and I did get close to that on the second day. After 16 hours, the battery was down to 14%. Another day, after 12 hours it was down to 12%. When it comes to charging the Apple watch, it's a magnetic dock that has a 2 metre long USB cable. You can't use your iPhone charging cable to charge the watch. I understand it's an engineering challenge that means currently every wearable has its own charging connector or charging dock. It's annoying, another cable to carry around. Don't lose it, a replacement isn't cheap at £29.

There are countless other reviews based upon a week's usage of the Apple watch. One week's usage won't always reveal the flaws, especially design defects. I'll give you a very real example. My Gear S has a charging dock that clips onto the watch, and you plug the micro USB charging cable into the charging dock. After 4 months of usage, the charging dock no longer clips onto the watch, meaning I can't charge it (unless I keep the dock in place with an elastic band). The exact same thing also happened after a few months with my Samsung Gear Fit. I went to the Samsung store in London yesterday, who told me that my warranty wouldn't cover this problem, as it was a cosmetic fault. I would have to purchase a new charging dock, which they didn't have in stock, as they don't sell many Gear S devices. I'm not the only one, as Gear S owners in the USA have the same problem, and a received a similar response from Samsung USA. Knowing how the Apple watch performs over a longer period of time is critical, as well as observing how Apple will respond to problems as they occur.

Charging docks, special adaptors, and unique cables all make living with wearable technology, more challenging than it needs to be. Just yesterday I came across a company called Humavox in Israel working on wireless charging which would include wearables. I really hope they succeed in making wearables easier to live with. In the meantime, one advantage of the Gear S is the charging dock also doubles as a supplementary battery, so if you are away from home and low on battery, you can just clip on the charging dock. Nothing like that with the Apple watch, apart from an aftermarket 'Reserve strap' coming out later this year. It promises to charge your watch as you wear it, but costs $249. An expensive fix for an already expensive watch.

The futuRE

The Apple watch is a good first attempt, and if Apple invest in refining the product, it may become a successful product line for them in the long term. Like many of its rivals, it is primarily an extension of the smartphone, another screen, on our wrist. Look around you, and most people aren't wearing a 'smartwatch.' Samsung has launched so many models, yet none of them have really gone mainstream. Apple may not succeed immediately with this first version of their watch, but simply because they are Apple, they may shift the culture and make consumers more interested in purchasing (and regularly using) a 'smartwatch' of some kind, even if it's not made by Apple. 

How much value will the Apple watch add to to our daily lives? Will it make a difference only to the young, or will it benefit the old too? Apart from making life more convenient, will it actually play a role in improving our health, or saving us money? It is too early to answer those questions as it has only just hit the market, but those are key questions to answer.

I'd personally want to get my questions about the accuracy of my heart rate data answered, especially if data from my watch could one day be added to my medical records. Even the differences in steps/distance walked/calories burned between the Apple, Samsung & Microsoft devices make me think twice about unvalidated data ending up in the system of my doctor or insurer. 

Genuine advances are needed in battery life, how much information is the Apple watch not able to capture about my health because it has to be charged whilst I sleep? If I'm travelling, I don't want to interrupt my routine to find somewhere to charge my watch. 

Today, based upon my experience so far,  I believe the Apple watch is the best 'smartwatch' available. It has got fewer flaws than other devices, such as the Gear S, but it still has got flaws that Apple needs to deal with. I have to admit I didn't really like it at first, but as I learnt how to use the features, it grew on me. Now tomorrow, it could be someone else, or a new form of technology, not even necessarily in form of a watch. Some people tell me they view the Apple watch as technology that is already redundant, good for loyal Apple customers, but not a genuine innovation in this arena. 

You've got the Pebble Time watch with the concept of 'smart straps', which could allow new possibilities. Then there is the Bluetooth 4.2 specification which just got finalised in Dec 2014, featuring low power IP connectivity. What would that mean for future devices? Bluetooth smart sensors that could connect directly to the internet, without having to be paired to a smartphone or tablet. 

Yi Tuntian, a former Microsoft official in China claims that wearables will replace mobile phones soon. I find that claim hard to believe. 

How about the new chip developed in Taiwan, which integrates sensors for tracking health as well as data transmission and processing. This chip is so small so that "people could wake up in the morning to the voice of a microcomputer in a headset informing them of the state of their health and things to look out for in their lifestyle."

It may be the case that the Apple watch ends up being of significant value for particular applications in healthcare & clinical trials for those who can afford it, but does not have long term success as a general smartwatch with the average consumer. Here in the UK, with the NHS hunting down the back of the sofa looking for extra pennies, experimenting with the Apple watch may be a pipe dream at best. 

I did find a wonderful story of how the Apple watch has changed someone's life, in just 5 days. Molly Watt, a 20 year old woman in England who has Usher Syndrome Type 2a. She was born deaf and has only a very small tunnel of vision in her right eye. In her blog, she describes how the different taps for turning left and right that helped me feel safer walking in Milan at night, allowed her to feel more confident when walking down the street, without relying upon hearing or sight. We might not see much benefit from Apple Pay on the watch for mobile payments, but could this feature be tremendously useful to someone with learning difficulties?

Without giving it a try and without generating evidence, it would premature to dismiss the Apple watch completely. As these consumer technologies evolve at an increasing rate, what actually is evidence, and how do we collect it?

You may see wearables as just a fad, a passing phase, and you'd never wear any of these devices. Well, what if you had to wear a device on your wrist, just to get insured? Nope, it is not science fiction, it iss the view of Swiss Re, a reinsurance giant whose executives believe it will be impossible to get life insurance in 5 to 10 years without a wearable device

A really fascinating article from Taiwan discusses the profitability of smartwatches in healthcare, and mentions, "Service platforms that integrate medical care organizations with insurance companies will produce the greatest value." 

Fitness is touted as one of the immediate applications for the Apple watch, yet Gregory Ferenstein's review suggests you won't gain much from the Apple watch in the fitness arena over and above simply using an iPhone. 

Or maybe we are misguided in pursuing the idea of 'smartwatches' entirely? Below is a great talk given by Gadi Amit recently at WIRED Health talking about the concept of wearable tech under our skin, and he states, "The biggest issue that I see… is the idea that if we load more and more functionality on our wrists, things will get better. In many cases, it does not."

I'm not surprised that Apple have sold so many watches, as they have a well oiled marketing machine. How many of today's purchasers will still be using the watch in 12 months time, or will it go the way of Google Glass? And how many people would be willing to upgrade to a newer version of the watch in 12-18 months? These are the hard metrics that we need to pay attention to, once the initial enthusiasm dissipates.

In my opinion, the single biggest improvement Apple could make is finding a way to extend the battery life, and also offer wireless charging. I'd happily have fewer features in exchange for not having to charge it every day. Come to think of it, current engineering limitations on battery life impacts the use of many portable devices, whether it is wearable tech, phones, tablets or laptops. We need a breakthrough in battery technology. 

So, will people wearing an Apple watch been treated with the same disdain as those who wore Google Glass? Users of Google Glass got branded, "Glassholes" and so will users of the Apple watch get branded, "Glanceholes?" 

The Apple watch is dead. Long live the Apple watch.

[Disclosure: I have no commercial ties to any of the individuals or organisations mentioned in the post]

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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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