Honesty is the best medicine

In this post, I want to talk about lies. It’s ironic that I’m writing this on the day of the US midterm election where the truth continues to be a rare sight to witness. Many in the UK feel they were lied to by politicians over the Brexit referendum. Apparently, politicians face a choice, lie or lose. Deception, deceit, lying, however you want to describe it, it’s part of what makes us human. I reckon we’ve all told a lie at some point, even if we’ve told a ‘white lie’ to avoid hurting someone’s feelings. Now, some of us are better at spotting when others are not telling the truth. Some of us prefer to build a culture of trust. What if we had a new superpower? A future where machines tell us in real time who is lying.

What compelled me to write this post was reading a news article about a new trial in the EU of virtual border agents powered by Artificial Intelligence (AI), which aims to “ramp up security using an automated border-control system that will put travellers to the test using lie-detecting avatars.” I was fascinated to read statements about the new system such as “IBORDERCTRL’s system will collect data that will move beyond biometrics and on to biomarkers of deceit.” Apparently, the system can analyse micro expressions on your face and include that information as part of a risk score, which will then be used to determine what happens next. At this point in time, it’s not aimed at replacing human border agents, but simply to help to pre-screen travellers. It sounds sensible right, if we can use machines to help keep borders secure? However, the accuracy rate of the system isn’t that great and some are labeling this type of system as pseudoscience and it will lead to unfair outcomes. It’s essential we all pay attention to these developments, and subject them to close scrutiny.

What if machines could one day automatically detect if someone speaking in court is lying? Researchers are working towards that. Check out the project called, DARE: Deception Analysis and Reasoning Engine, where the abstract of their paper opens with “We present a system for covert automated deception detection in real-life courtroom trial videos.“ As algorithms get more advanced, the ability to detect lies could go beyond analysing videos of us speaking, it could even spot when we our written statements are false. In Spain, police are rolling out a new tool called VeriPol which claims to be able to spot false robbery claims, i.e. where someone has submitted a report to the police claiming they have been robbed, but the tool can find patterns that indicate the report is fraudulent. Apparently, the tool has a success rate of over 80%. I came across as British startup, Human, that states on their website, “We use machine learning to better understand human's feelings, emotions, characteristics and personality, with minimum human bias” and honesty is included in the list of characteristics their algorithm examines. It does seem like we are heading for a world where it will be more difficult to lie.

What about healthcare? Could AI help spot when people are lying? How useful would it be to know if your patient (or your doctor) is not telling you the truth? In this 2014 survey in the USA, the patient deception report stated that 50% of respondents said they withhold information from their doctor during a visit, lying most frequently about drug, alcohol and tobacco use. Zocdoc’s 2015 survey found that 25% of patients lie to their doctor. There was an interesting report about why some patients are not adhering to what a doctor’s advice, and it’s because of financial strain, and that some low income patients are reluctant to discuss their situation with their doctor. The reasons why a patient might be lying are not black and white. How does an algorithm take that into account? In terms of doctors not telling patients the truth, is there ever a role for benevolent deception? Can a lie ever be considered therapeutic? From what I’ve read, lying appears to be a path some have to take when caring for those living with Dementia, to protect the patient.

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Imagine you have a video call with your doctor and on the other side, the doctor has access to an AI system analysing your face and voice in real time and determining not just if you’re lying or not, but your emotional state too? That’s what is set to happen in Dubai with the rollout of a new app. How does that make you feel, either as a doctor or as a patient? If the AI thinks the patient is lying about their alcohol intake, would it include that determination against the patient’s medical record? What if the AI is wrong? Given the accuracy of these AI lie detectors is far from perfect, there are serious implications if they become part of the system. How might that work during an actual visit to the doctor’s office? In some countries, will we see CCTV in the doctor’s office with AI systems analysing every moment of the encounter to figure out which answers were truthful? What comes next? Smart glasses that a patient can wear when visiting the doctor and the glasses tell the patient how likely it is that the doctor is lying to them about their treatment options? Which institutions will turns to this new technology because it feels easier (and cheaper) than fostering a culture of trust, mutual respect and integrity?

What if we don’t want to tell the truth but the machines around us that are tracking everything reveal the truth for us? I share this satirical video below of Amazon Alexa fitted to a car, do watch it. Whilst it might be funny, there are potential challenges ahead in terms of our human rights and civil liberties in this new era. Is AI powered lie detection the path towards ensuring we have a society with enough transparency and integrity or are we heading down a dangerous path by trusting the machines? Is honesty really the best medicine?

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

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An interview with Adrian Leu on the role for creativity in healthcare

Given the launch of products such as the Samsung Gear VR or Pokemon GO, many of us are experimenting with developments in technology such as Virtual Reality (VR) and Augmented Reality (AR) to both create, share and consume content. One of the challenges in Digital Health when it comes to creating an app is where the expertise will come from for building it? It’s an even bigger challenge if you want to find organisations who can build cutting edge VR/AR experiences for you. I strongly believe that the health & social sectors would benefit significantly from greater engagement with the creative sector. Here in the UK, it’s not just London that offers world leading creativity, it’s all around the nation. 

Now in my own personal quest to understand who can help us build a future of Immersive Health, I’ve been examining who the leaders are in the creative sector, and who has a bold enough vision for the future that could well be the missing ingredient that could help us make our healthcare systems fit for the 21st century. I was at an event earlier this year in London where I heard a speaker, Adrian Leu, talk about the amazing work they are doing in VR. Adrian Leu is the CEO of Inition, a multidisciplinary production company specializing in producing installation-based experiences that harness emerging technologies with creative rigour.

So I decided to venture down to their headquarters in London, and interview Adrian.

1. Inition – Who are they?
We are a multi disciplinary team, and have built our reputation looking at new technologies before they become available commercially and how these technologies can be combined to create creative solutions. We are quite proficient in creating experiences which combine, software and hardware. We’ve done many firsts, including one of the first AR experiences. We also did the 1st VR broadcast of a catwalk show from London Fashion Week for Topshop.

We have a track record of over 13 years and hundreds of installations in both the UK and abroad, and we are known for leveraging new technologies for creative communications well before they hit the mainstream; We have have been augmenting reality since 2006, printing in 3D since 2005, and creating virtual realities since 2001. There aren’t many organisations out there who can say the same! We have also combined 3D printing with AR. I’m really proud that we have a finely tuned mixture of people strong on individual capabilities but very interested in what’s happening around them.

We work as an integrator of technology in the area of visual communications. Our specific areas move and shift as the times change. Currently we are doing a lot of stuff in VR, 2 years ago we were doing a lot of AR. Whilst others are talking about this tech, we have tried a lot of them, and we know the nitty gritty of the practical implementations.

We’ve worked with many sectors: pharma, oil/gas, automotive, retail, architectural (AEC), defense and aerospace, and the public sector.

2. What are the core values at the firm?
People are driven here by innovation, creativity, things which have a purpose, and at the end of the day, a mix of all 3 elements. The company was actually founded by 3 men who came from a Computer Sciences and simulation background. It has been run independently for 11 years, then acquired by a PLC 4 years ago, and one of the founders is still with us. Since last year, I have been CEO. My background is data visualisation, my PHD was in medical visualisation, where I was using volumetric rendering to reconstruct organ representations from MRIs.
 
3. Which of your projects are you proudest of?
Our work with the Philharmonia Orchestra and the Southbank Centre is one of them. This was the 1st major VR production from a UK symphony orchestra. In fact, there is a Digital Takeover of the Royal Festival Hall taking place between 23rd September and 2nd October 2016. What’s interesting for me, is the intersection of music, education and technology. If you really want to engage young people with classical music, you have to use their tools. It’s a whole narrative that we are presenting, it offers someone a sight of sounds, what it feels like to be in the middle of an orchestra and be part of their effort to bring the music to its audience.

The other project is our live broadcast of the TopShop catwalk show at London Fashion week 2 years ago. It was filmed in real time at the Tate Modern, and broadcasted to the TopShop flagship store on Oxford Street. Customers won the chance to use VR headsets to be (remotely) present at the event from the store.

For me, what both projects show is the power of telepresence and empathy.

4. Many people believe that VR is only for kids and/or limited to gaming - how do you see the use of VR?
Well, a lot of VR is driven by marketing at the moment, and as a point of entry, VR will be used to go after the low hanging fruit. There is nothing wrong with that. Any successful project will have to have great content, not to see any wires, invisibility, to have a clear purpose, an application and ultimately, a sustainable business model. 

For example, if you are in the property industry, if you allow clients to see 50 houses in VR, they won’t make the decision from the VR headset, but they might filter to 20 from the 50. So it will impact the bottom line.  The connected thinking is not yet done, it will come.  I can see VR being used in retail, i.e. preparation for new product line. You can recreate the retail store in VR, reducing the costs with remote presence.

5. What are the types of projects you’ve done for healthcare clients to date?
Most projects were about the visual communication of ideas, of data or the visual impact of drugs on people. Or at a conference, we helped showcase something that is interactive or engaging, for example, recreate a hospital bed, where there is a virtual patient, and you can see the influence of the drugs through their body. 

Another project we did was showing how it feels to have a panic attack - to help a HCP understand what a patient is going through (in terms panic attack). There are lots of implications from VR, the first technology that could help to generate more empathy for patients. We’ve also done work with haptic and tracking technologies. One example is our work with hospitals and university departments, we tracked a surgical procedure, right down to tracking finger movements, the way a student does a certain procedure and compared that to a certain standard. Thus giving them the opportunity to practice in the immersive environment.

6. What are your future ideas for the use of immersive tech?
Let’s return to empathy. You can create virtual worlds, that someone living with autism may be able to understand, where they can express things. It’s about really understanding what someone is going through, whether it’s curing of phobias or preparing soldiers to go into war.

7. In the future, do you think that doctors would prescribe a VR experience when they prescribe a new drug?
It's the power of the visual communication. I don’t see why we couldn’t have the VR experience as THE treatment.

8. What do you think is coming in the future, above and beyond what’s here today?
Haptics? Smell? The ability to combine physical stuff with the virtual stuff, where you can even smell and touch in a virtual world. An interesting experiment would be to see what could happen if we were expecting something but in VR we had something else, how could it hit our brain?

I can imagine a future where we could superimpose, diagnostic and procedural led images onto the patient. A future where a neurosurgeon would use AR to project 3D imagery from MRIs or CT scans in real time over the brain to  be guided by the exact position of the tumour during to surgery. It’s only a matter of time before this can be available.

9. Who will drive VR/AR adoption in healthcare?
It will be consumers, since that’s the big change we have seen this year, in terms of technology that is becoming available to the man on the street. People will become more accustomed to the tech, we can see that lots of startups are focusing on this, and in the end, I expect the NHS will be looking into this as a strategic priority.

We understand that adoption has to be research driven, there is a need for solid evidence. We are actually part of a European project called V-Time, as a technology partner along with the University of Tel Aviv, and it’s for the rehabilitation of elderly people who have had a fall. It consisted of a treadmill, their feet tracked and in front of them was a big screen. They would have to walk on a pavement in a city, from time to time, facing a variety of virtual obstacles which they have to avoid. The system was analysing how well they were doing that.

10. If a surgeon is reading this, and you wanted to inspire them to think about immersive tech in their work, what would you say?
My father was a surgeon, and he was very empathetic with his patients. He always treated them like they were part of his family. He was always taking calls at night from the patient’s relatives.

If in the future, we can create technology, where immersive systems can explain what’s happening, getting patients and their families more involved, explaining what will happen during the operation, the different things that the surgeon can do and how it will impact the results.

Surgeons have very limited time to do this explanation, I’m confident we can use immersive technologies and visual communication to give the relatives the information and reassurance they seek. If someone is presented with the option of having a surgical procedure but is unsure, why can’t we use VR so patients can be right there in the surgery, and that experience could help them determine whether they actually want to go ahead with the surgery or not? Could the immersive experience help someone get past the fear of having that operation?

11. What about VR and a visit to the GP?
We already have virtual visits over Skype, but what if we threw in haptics. You have the doctor and the patient wearing data (haptics) gloves and in this virtual doctor's office, the patient can help the doctor feel exactly what they are feeling in terms of the location of rash/pain, the exact SPOT. 

Or maybe a cap for the head, for when the patient wants to explain about their headaches, being able to point to the exact spot where the pain is the greatest. A remote physical examination in the virtual world with haptics. 

Another scenario, is when I get into my virtual environment, I have all the other data coming from my Apple watch, other biosensors, vital sign streaming. My doctor could discuss this with me in the virtual room.

12. Which country/city in the world is leading innovation in immersive tech?
It depends upon the area. Some would assume it’s Silicon Valley. In my opinion, London is more advanced in VR/AR. Why? London is THE creative hub, and a lot of immersive tech is driven by creative industries.

The UK as a whole has a thriving creative sector, and the NHS could certainly benefit from greater cross-sector collaboration. We’ve worked for example in the past with and Guys and St Thomas.

13. What would you advise people in healthcare who want to explore the world of immersive tech?
People can come and visit us and play with a variety of tools, it might not be something that’s exactly what they need, but it’s a good experience. Inition’s Demo Lab is a very safe and instructive “sandbox”.

The Demo Lab

The Demo Lab

We can have conversations with people about these technologies, we know how to connect these things together. We’re open to anyone internationally, what drives us are projects that are going to improve the wellbeing of people. What we can’t do is large scale research, without getting partners involved. We can give you a lot of advice, and we can even create prototypes that can be validated through large scale studies. We are open to conversations, whether you are a large pharmaceutical company, in charge of a medical school or even a GP in a small practice.

Adrian Leu & Inition are both on Twitter and click here for the Inition website.

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

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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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Shifting to a world of prevention: A GP's story

For this post, I caught up with Dr Manpinder Sahota, a GP in Britain's NHS. We first interacted over Twitter, where we met on the topic of shifting healthcare to a world of prevention. Dr Sahota said he had a vision for building a GP practice with a focus on wellness and prevention of disease, and was curious if technology could play a role in that. So I hopped on a train to see him, and what follows is the interview at his practice, in Gravesend. For those who have never visited, Gravesend is an ancient town in north west Kent, England, situated 21 miles east south-east of Charing Cross, London on the south bank of the Thames estuary. Gravesend has one of the oldest surviving markets in the country, its earliest charter dates from 1268. For my American readers, Gravesend is where Princess Pocahontas is buried, having died there almost 400 years ago, on a ship bound for the Commonwealth of Virginia. Back to the present day, Gravesend [and the borough of Gravesham that it falls under] faces the challenge of childhood obesity, with 38.9% of 10 to 11-year-olds resident in Gravesham being overweight or obese. Demographics are changing, with 17% of the population of the borough of Gravesham having been born outside of the UK. 

Hearing about new models of care with Dr Manpinder Sahota at his GP practice

Hearing about new models of care with Dr Manpinder Sahota at his GP practice

1. What is your role & responsibilities?
I've been at the Pelham medical practice since 1999. We have 7 GPs, over 2 sites and almost 14,000 patients. I'm the Diabetes lead and a GP trainer as well. I also provide free acupuncture to some of my patients. 

2. What are the key challenges you're facing in the year ahead? 
In a place like Gravesend, where 50% of patients are not tech savvy, getting reminders on their mobile phone or 'choose and book' [Note: Choose and Book is a national electronic referral service which gives patients a choice of place, date and time for their first outpatient appointment in a hospital or clinic] doesn’t mean anything to them. Furthermore,  many can just about get to the local hospital on the cheapest bus, and often they can't afford a taxi to a hospital that is further away, so services such as 'choose and book' are of no use to them.  I'm seeing the local population getting sicker and sicker, and although some of my patients are living longer due to being on 9 or 10 drugs, they usually have very little quality of life. 

My main challenge is educating people in lifestyle changes, especially those from the lower social classes. I've found that if I can give them a practical bit of advice or even encouragement, it does lead to lower blood pressure and loss of weight.  

Patients only seem to listen when they are about to have ill health, many times there is no motivation to change behaviour, diet and exercise, especially given education levels can be quite low. 

I'm interested in pre-Diabetes and screening for pre-Diabetes, that is where the biggest change can happen. Usually, my patients know a bit about Diabetes from someone in the family, so there is some emotional trigger, which can help in our conversations. 

3. What is your big vision for moving to a world with a focus on prevention of disease?
My overall big vision is to get away from prescribing drugs, there are dangers of polypharmacy and I want to get people to rely upon themselves, and use lifestyle medicine as the first discussion point, before we go down the path of handing out tablets. I'm also thinking about depression, back pain, obesity related diseases, and am keen to provide Tai Chi classes, Yoga classes and Meditation classes at this new centre.

4. Tell us more about your new centre
My new centre is not replacing the existing GP surgery. It would be a new GP practice with a preventative component, One idea is to have a gym at the top of the surgery where Tai Chi classes could take place. I want to be able to prescribe patients a 12 week course on diet and nutrition with a personal trainer. There is a national program where certain courses for diabetes prevention can be done. No current funding, but in the future, there should be money coming from it. If the NHS wont fund my ideas, I will go to the British Heart Foundation or National Lottery. 

5. Switching over to technology, there is much talk about giving patients online access to their medical records, in the hope that it will improve the quality of care, shared decision making as well as patient outcomes. How often do patients come in and ask for a paper copy of their medical records?
Very rarely, it does happen though.

6. If today, your practice was able to offer online access to medical records for your patients, as an estimate, how many would use it?
I estimate 25% would use it. The remaining 75% aren't that educated and/or don't have computers. In fact, 10% of the patients visiting our practice need an interpreter during the visit, as they don't speak English, or don't speak it well enough. 

Our other practice is in a deprived area. Over there, the patients tend to believe the doctor knows best, and they don't want to be involved in their treatment decision, patients actually want a paternalistic healthcare system. Quite a lot of my Indian patients, believe that the doctor is God, and if you give them management options, they are not interested.

7. We hear so much about how wearable technology is changing healthcare. How many of your patients are coming in and showing you apps or wearables with respect to behaviour change (such as using a FitBit as a tool in increasing physical activity)?
Hardly any patients are showing up at appointments with this kind of technology.

8. What are your thoughts when you hear the term 'Big Data' in healthcare? How does it make you feel as a GP?
We are already overloaded with information, letters from hospitals, from agencies, if we have to look at even more information, that would be too much for us. We are doing too much administration work already, any new information would have to be controlled very well. We are literally drowning in information, as everything in the NHS gets sent to a patient's GP.

9. How might 'smarter homes'  in the future help you as a GP in terms of prevention?
Technology that could help spot rises in blood sugar, oxygen, pulse rates. Patients are already bringing in paper to their appointments showing their rising Blood Pressure levels. For current hypertensives, I'd like to see a patient's BP readings at home on my computer screen prior to the patient's visit. Patients could save admin time if they could pre-enter this information for me to see. What if we could get food diaries into patient's medical records, that would be great for preventing Diabetes. To be able to understand what they are eating on a daily or weekly basis, the carbohydrate content etc. 

10. Who influences you?
I follow Dr Aseem Malhotra and Jamie Oliver, they are both leading a national conversation. I hope to see celebrities and sports starts taking up the baton in health prevention and get involved in their local areas. What if we had footballers like David Beckham or Wayne Rooney helping to spread this message? Kids would listen to those people, rather than us. 

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

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Promise doesn't equal proof

I've just returned from California, where I attended these 3 conferences;

For this post, I'm going to focus on what I observed at these events regarding the quest for evidence in Digital Health. I'll be writing separate blog posts in the future relating to my overall experience at each of these events.

Starting with the first event which was hosted by Scripps Translational Science Institute, I was excited about the event. The opening sentence in the brochure said, "A thoughtful exploration of the clinical evidence necessary to drive the widespread uptake of mobile health solutions will be the focus of the first Scripps Health Digital Medicine conference." When booking my place, Three of the educational objectives of the event which sounded tremendously useful to me as a participant were;

  • "Assess the quality of clinical trials of mobile health in terms of providing the evidence necessary to support implementation"
  • "Discuss the implementation of mobile health technologies into clinical practice based on clinical trial evidence"
  • "Identify innovative trial methodologies for use in digital medicine"

Having attended, I don't really feel those three objectives were met. Whilst some of the sessions were very interesting and thought provoking, it wasn't because the speakers were discussing evidence generation or clinical trials in this arena. Often they were talking about the future of Digital Health, and where we are heading. I walked away feeling confused and disappointed. Only on the second day, when Jeff Shuren, Director of the Center for Devices and Radiological Health at the FDA spoke, did I see a session which specifically related to the objectives listed above.

So onto Health 2.0, where I was expecting validation and evidence to be discussed at two sessions. The first was "Validating Performance in Healthcare and Turning the Dial on Credibility" and the second was "Arc Fusion: Getting real about the convergence of health IT and biomedicine." In the first session, Vik Khanna from Quizzify made a number of good points.

I didn't manage to attend the second session, but the talk was captured on video, and can be found here. Having watched the 40 minute video, there wasn't much exploration of evidence or validation.

However, before either of those two sessions took place, it was useful to hear about validation at the session on "Health Data Exploration Project-Personal Data for the Public Good." It's good that they are pursuing this research, and I look forward to seeing what they discover.

I also noticed this tweet during Health 2.0, but I can't find a link on the web that shows what the American Medical Association is doing here.

At Body Computing, there was a panel discussion on "Building a virtual healthcare system" and I asked the panel about whether we need some kind of new institute that can validate & certify these new digital interventions. Andy Thompson, the CEO of Proteus Digital Health replied, and said that we don't need new institutions, and that industry needs to collaborate with regulators to improve regulatory science, as the regulators can't do it alone. At some level, I think he has a good point, and later in this post, I'll explain why we might actually need a new institute.

I've tried a lot of wearable technology, especially smart watches, and there still isn't any real evidence showing that these are making an impact on our health. Whilst a watch that can remind you to walk more or workout at the gym in the best heart rate zone is of some use, many who work with patients every day, are asking, "What's the medical benefit?" There is a huge unmet need out there for wearable technology developed with medical grade sensors that doctors and patients can trust and use with confidence.

At Body Computing, I witnessed the first public viewing of the AliveCor ECG for the Apple watch. You can see a demo by Dr Dave Albert, founder & CMO of AliveCor, in my video below.

I must mention that this new AliveCor product is a prototype and has not been FDA cleared yet. I personally expect it to be a roaring success when it is launched. I note that at the Scripps conference, when both patients and doctors were commenting on what Digital Health product had impacted their life, AliveCor was cited nearly every time. The fact that the AliveCor app on the watch records the patient's voice, links it to the location, takes us a step forward on the path to a single patient view, the marriage of hard and soft data. We need more of this science driven innovation in Digital Health, where gathering of evidence is not an afterthought, and where the product/service has a clearly defined medical benefit. 

I am witnessing increasing use of algorithms in healthcare, especially since we're collecting more data than we ever have before. Algorithms are like the invisible hand that guides many of our decisions, and since they are programmed by humans, how do we know what bias is incorporated into them? The recent scandal which involved Volkswagen's cars and an algorithm that was cheating the system makes me think about the need for greater transparency in healthcare.

I appreciate that in the modern era, algorithms are closely guarded secrets by companies just like Kentucky Fried Chicken guards its secret recipe. I'm not saying that private corporations should make their algorithms open source and lose their competitive advantage, but maybe we need an independent body that can be monitoring these algorithms in healthcare, not just once when the product is approved, but all year round, so that we can feel protected? I found a fascinating post by Jason Bloomberg, who in response to the VW emissions scandal, asks if this is the death knell for the Internet of Things?  Bloomberg cites 'calibration attacks' as the possible cause of the VW scandal, and goes on to highlight how this may impact healthcare too. In my opinion, each of the three conferences I attended should have had a session where we could have a healthy debate about algorithms. I keep hearing about how artificial intelligence, big data and algorithms will lead to so many amazing things, but I never hear anyone talking about calibration attacks, and how to prevent them. Zara Rahman closes her wonderful post on understanding algorithms with, "Though we can't monitor the steps of the process that humans decide upon to create an algorithm, we can - or should be able to - monitor and have oversight on the data that is provided as input for those algorithms."

I don't think it's alarmist to examine a range of different future scenarios and to consider updated regulatory frameworks to reflect threats that never existed before. It's wonderful to hear speakers at conferences show us how the future is going to be better due to technological advances, but we also need to hear about the side effects of those new technologies too.

I recognise that not every digital intervention will need clinical trials and a whole body of evidence before it can be approved, accredited and adopted. For example, medication reminder apps that are a twist on the standard reminder app. Or it could be argued that even these simple apps should be regulated too? What if the software developer makes a mistake in the code and when a patient actually uses the app, their medication reminders in the app are switched around, leading to patient harm? A recent article highlights research that showed that most of the NHS approved apps for depression are actually unproven. Another related post by Simon Leigh, points out, "are apps forthcoming with the information they provide? It's easy enough to say this app beats depression, but do they offer any proof to turn this from what is essentially marketing into evidence of clinical effectiveness?"

Many people are so angry with the state of healthcare that they want this digital revolution to disrupt healthcare as quickly as possible. Asking for evidence and proof is often seen as slowing down this revolution, a sign of resistance to change. Just because something is digital doesn't mean we can trust it implicitly from the moment it's developed. Hype, hope and hubris will not be enough to deliver the sustainable change in healthcare that we all want to see. We are at a crossroads in Digital Health, and we have to be very careful going forwards that the recipients of these digital interventions aren't led to believe that promise equals proof.

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

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