Letting Go

It’s really difficult to write this post, not as difficult as the last one, Being Human, but still challenging. Sometimes the grief doesn’t let go of me, and sometimes I don’t want to let go of the grief. I can see the resistance to letting go of the pain of losing a loved one. Perhaps we mistakenly equate letting go of the pain as letting go of our loved one, and that’s why we want to stay in the darkness, hurting? At times, I feel under pressure to let go of my grief and to let go of my sister. As a man, I’ve been conditioned to believe that men don’t cry, that showing emotions in front of others equals weakness, and men shouldn’t grieve for too long, or grieve at all. Perhaps grief is a lifelong companion? The intensity decreases, but it’s ever present, etched into your existence.

My daily walks & bike rides at sunrise in the park continue to be therapeutic, some of the photos I’ve taken can be seen below. 

My loss has led to me reflecting upon many big questions in life. Why are we here? What does it all mean? How much longer do I have left? Pritpal Tamber’s recent blog, where he wrote, “Death always makes me ask what I'm doing with my life.” resonates with me very much at this time.

Being reminded that death can come at any moment has given me some clarity to how I see the world, in terms of where my attention rests, and in particular, how I view my health. There is so much outside of our control in life, that we often feel powerless. However, by taking time to connect with myself, I remembered that I can choose how I respond to situations in life. What can I do to reduce the risk of dying prematurely? That’s something that is front of mind at present. So, I’m in the park every day at sunrise and active for at least 2 hours. I have maintained this routine for almost 8 weeks. I made choices before which resulted in a very sedentary lifestyle. I didn’t need to see a healthcare professional to know that I really enjoy being outdoors in nature. I also paused long enough to observe what I was eating and noticed some odd behaviours, such as eating not because I was hungry, but because I was bored. So I’ve made conscious choices in terms of what I’m eating and when I’m eating. It’s been very difficult to change, but I’m motivated by the results of my effort. I’ve lost 6kg (13 lbs) and the weight loss happened after I started eating less, I wasn’t losing weight simply by being active. After years where I was living life at an ever increasing pace, I find myself through recent circumstances forced to slow down, and just be. It’s prompted me to reconnect with my love of cooking to take the time to make meals from scratch. I’ve slowed down in my work too, pausing to evaluate each new opportunity, wondering if taking the project on will help me create the life I want?

I’ve noticed in the last few years, I’ve talked with so many people who have amazing jobs, with great colleagues, who are contemplating leaving to forge their own path in the unknown. The one common factor is that all of them yearn for more freedom in what they can do, what they can say, and most importantly, what they can think. I believe we are conditioned on so many levels, from the moment we are born. Some of that conditioning is useful, but some of it also only serves to make us conform to someone else’s view of how we should be, and we end up losing the connection to our authentic selves. It’s almost like each of these people that I’ve met are struggling with letting go of the conditioning they’ve received at school, work and home. It’s been 5 years since I left the security of my career at GSK, and I’ve had to unlearn many of the beliefs that kept me feeling powerless. I believe the unlearning will be a lifelong process. Occasionally, there are moments where I wonder if I’m good enough simply because I don’t have a job at a prestigious multinational anymore? I don’t know where I picked up this flawed belief, but it’s not a belief I want to hang on to. Recently, I’ve reconnected with Nicolas Tallon, a friend that I first worked with almost 20 years ago, when we were using data to help organisations understand which consumers were most likely to respond to marketing campaigns. He has now left the security of his career in banking to launch his own consultancy, and he’s chosen to look at innovation very differently. I really enjoyed his first blog post, where he wrote,

“Banking has not really changed for centuries and the Fintech revolution has barely changed that. In fact, digital technologies have been used almost exclusively to streamline existing processes and reduce channel costs rather than to reinvent banking. Disruption will happen when one player creates a new meaning for banking that resonates with consumers. It may be enabled by technology but won’t be defined by it.”

I believe that what Nicolas wrote applies to healthcare systems too, since much of the digital transformation I’ve witnessed has simply added a layer of ‘digital veneer’ to poorly designed processes that have been tolerated for a very long time. So many leaders are desperately seeking innovation, but only if those new ideas fit within their narrow set of terms and conditions. We build ever more complex systems, adding new pieces to the puzzle, yet frequently fail to let go of tools, technologies and thoughts that are not fit for purpose. What might happen if we gave ourselves permission to be more authentic? Will that bring the changes we truly desire? I read this week that my former employer, GSK, is making changes to the way an employee’s performance is being measured, “When staff undergo their regular career appraisals, they will be judged on a new metric: courage.” It will be interesting to see the impact of this change.

We often get so excited about digital technologies, and the promises of change they will bring in our industry, yet we don’t get excited about optimising the ultimate technology, ourselves. Soren Gordhamer asks in a recent blog post, “How much do we each tend to the Invisible World, our Inner World each day?” Life works in mysterious ways, and often signs appear in front of us at the right moment. This weekend when I was in the park, I came across this sign, which inspired me to write this post.

IMG_20170729_061902.jpg

“Some of us think holding on makes us strong, but sometimes it is letting go.” - Herman Hesse

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

Enter your email address to get notified by email every time I publish a new post:

Delivered by FeedBurner

Being Human

This is the most difficult blog post I’ve ever had to write. Almost 3 months ago, my sister passed away unexpectedly. It’s too painful to talk about the details. We were extremely close and because of that the loss is even harder to cope with. 

The story I want to tell you today is about what’s happened since that day and the impact it’s had on how I view the world. In my work, I spend considerable amounts of time with all sorts of technology, trying to understand what all these advances mean for our health. Looking back, from the start of this year, I’d been feeling increasingly concerned by the growing chorus of voices telling us that technology is the answer for every problem, when it comes to our health. Many of us have been conditioned to believe them. The narrative has been so intoxicating for some.

Ever since this tragedy, it’s not an app, or a sensor or data that I turned to. I have been craving authentic human connections. As I have tried to make sense of life and death, I have wanted to be able to relate to family and friends by making eye contact, giving and receiving hugs and simply just being present in the same room as them. The ‘care robot’ that had arrived from China this year as part of my research into whether robots can keep us company, remains switched off in its box. Amazon’s Echo, the smart assistant with a voice interface that I’d also been testing a lot also sits unused in my home. I used it most frequently to turn the lights on and off, but now I prefer walking over to the light switch and the tactile sensation of pressing the switch with my finger. One day last week, I was feeling sad, and didn’t feel like leaving the house, so I decided to try putting on my Virtual Reality (VR) headset, to join a virtual social space. I joined a virtual computer generated room where it was sunny and in someone’s back yard for a BBQ, I could see their avatars, and I chatted to them for about 15 minutes. After I took off the headset, I felt worse.

There have also been times I have craved solitude, and walking in the park at sunrise on a daily basis has been very therapeutic. 

Increasingly, some want machines to become human, and humans to become machines. My loss has caused me to question these viewpoints. In particular, the bizarre notion that we are simply hardware and software that can be reconfigured to cure death. Recently, I heard one entrepreneur believe that with digital technology, we’ll be able to get rid of mental illness in a few years. Others I’ve met believe we are holding back the march of progress by wanting to retain the human touch in healthcare. Humans in healthcare are an expensive resource, make mistakes and resist change. So, is the answer just to bypass them? Have we truly taken the time to connect with them and understand their hopes and dreams? The stories, promises and visions being shared in Digital Health are often just fantasy, with some storytellers (also known as rock stars) heavily influenced by Silicon Valley’s view of the future. We have all been influenced on some level. Hope is useful, hype is not. 

We are conditioned to hero worship entrepreneurs and to believe that the future the technology titans are creating, is the best possible future for all of us. Grand challenges and moonshots compete for our attention and yet far too often we ignore the ordinary, mundane and boring challenges right here in front of us. 

I’ve witnessed the discomfort many have had when offering me their condolences. I had no idea so many of us have grown up trained not to talk about death and healthy ways of coping with grief. When it comes to Digital Health, I’ve only ever come across one conference where death and other seldom discussed topics were on the agenda, Health 2.0 with their “unmentionables” panel. I’ve never really reflected upon that until now.

Some of us turn to the healthcare system when we are bereaved, I chose not to. Health isn’t something that can only be improved within the four walls of a hospital. I don’t see bereavement as a medical problem. I’m not sure what a medical doctor can do in a 10 minute consultation, nor have I paid much attention to the pathways and processes that scientists ascribe to the journey of grief. I simply do my best to respond to the need in front of me and to honour my feelings, no matter how painful those feelings are. I know I don’t want to end up like Prince Harry who recently admitted he had bottled up the grief for 20 years after the death of his mother, Princess Diana, and that suppressing the grief took him to the point of a breakdown. The sheer maelstrom of emotions I’ve experienced these last few months makes me wonder even more, why does society view mental health as a lower priority than physical health? As I’ve been grieving, there are moments when I felt lonely. I heard about an organisation that wants to reframe loneliness as a medical condition. Is this the pinnacle of human progress, that we need medical doctors (who are an expensive resource) to treat loneliness? What does it say about our ability to show compassion for each other in our daily lives?

Being vulnerable, especially in front of others, is wrongly associated with weakness. Many organisations still struggle to foster a culture where people can truly speak from the heart with courage. That makes me sad, especially at this point. Life is so short yet we are frequently afraid to have candid conversations, not just with others but with ourselves. We don’t need to live our lives paralysed by fear. What changes would we see in the health of our nation if we dared to have authentic conversations? Are we equipped to ask the right questions? 

As I transition back to the world of work, I’m very much reminded of what’s important and who is important. The fragility of life is unnerving. I’m so conscious of my own mortality, and so petrified of death, it’s prompted me to make choices about how I live, work and play. One of the most supportive things someone has said to me after my loss was “Be kind to yourself.” Compassion for one’s self is hard. Given that technology is inevitably going to play a larger role in our health, how do we have more compassionate care? I’m horrified when doctors & nurses tell me their medical training took all the compassion out of them or when young doctors tell me how they are bullied by more senior doctors. Is this really the best we can do? 

I haven’t looked at the news for a few months and immersing myself in Digital Health news again makes me pause. The chatter about Artificial Intelligence (AI), where commentaries are at either end of the spectrum, almost entirely dystopian or almost entirely utopian, with few offering balanced perspectives. These machines will either end up putting us out of work and ruling our lives or they will be our faithful servants, eliminating every problem and leading us to perfect healthcare. For example, I have a new toothbrush that says it uses AI, and it’s now telling me to go to bed earlier because it noticed I brush my teeth late at night. My car, a Toyota Prius, which is primarily designed for fuel efficiency scores my acceleration, braking and cruising constantly as I’m driving. Where should my attention rest as I drive, on the road ahead or on the dashboard, anxious to achieve the highest score possible? Is there where our destiny lies? Is it wise to blindly embark upon a quest for optimum health powered by sensors, data & algorithms nudging us all day and all night until we achieve and maintain the perfect health score? 

As more of healthcare moves online, reducing costs and improving efficiency, who wins and who loses? Recently, my father (who is in his 80s) called the council as he needed to pay a bill. Previously, he was able to pay with his debit card over the phone. Now they told him it’s all changed, and he has to do it online. When he asked them what happens if someone isn’t online, he was told to visit the library where someone can do it online with you. He was rather angry at this change. I can now see his perspective, and why this has made him angry. I suspect he’s not the only one. He is online, but there are moments when he wants to interact with human beings, not machines. In stores, I always used to use the self service checkouts when paying for my goods, because it was faster. Ever since my loss, I’ve chosen to use the checkouts with human operators, even if it is slower. Earlier this year, my mother (in her 70s) got a form to apply for online access to her medical records. She still hasn’t filled in it, she personally doesn’t see the point. In Digital Health conversations, statements are sometimes made that are deemed to be universal truths. Every patient wants access to their records, or that every patient wants to analyse their own health data. I believe it’s excellent that patients have the chance of access, but let’s not assume they all want access. 

Diversity & Inclusion is still little more than a buzzword for many organisations. When it comes to patients and their advocates, we still have work to do. I admire the amazing work that patients have done to get us this far, but when I go to conferences in Europe and North America, the patients on stage are often drawn from a narrow section of society. That’s assuming the organisers actually invited patients to speak on stage, as most still curate agendas which put the interests of sponsors and partners above the interests of patients and their families. We’re not going to do the right thing if we only listen to the loudest voices. How do we create the space needed so that even the quietest voices can be heard? We probably don’t even remember what those voices sound like, as we’ve been too busy listening to the sound of our own voice, or the voices of those that constantly agree with us. 

When it comes to the future, I still believe emerging technologies have a vital role to play in our health, but we have to be mindful in how we design, build and deploy these tools. It’s critical we think for ourselves, to remember what and who are important to us. I remember that when eating meals with my sister, I’d pick up my phone after each new notification of a retweet or a new email. I can’t get those moments back now, but I aim to be present when having conversations with people now, to maintain eye contact and to truly listen, not just with my ears, and my mind, but also with my heart. If life is simply a series of moments, let’s make each moment matter. We jump at the chance of changing the world, but it takes far more courage to change ourselves. The power of human connection, compassion and conversation to help me heal during my grief has been a wake up call for me. Together, let’s do our best to preserve, cherish and honour the unique abilities that we as humans bring to humanity.

Thank You for listening to my story.

Patients and their caregivers as innovators

I've been conducting research for a while now on how patients and their families have innovated themselves. They decided not to wait for the system to act, but acted themselves. One leading example is the Open Artificial Pancreas System project, and they even use the hashtag, ##WeAreNotWaiting. I was inspired to write this post today for two reasons. 

  1. I delivered a keynote at the MISK Hackathon in London yesterday to innovators in both London & Riyadh reminding them that innovation can come from anyone anywhere on Earth.
  2. A post by the World Economic Forum about an Tal Golesworthy, an engineer with a life threatening heart condition who fixed it himself. 

I thought this line in the WEF article was particular fascinating, as it conveys the shock, surprise and disbelief that a patient could actually be a source of innovation, "And it flags up the likelihood that other patients with other diseases are harbouring similarly ingenious or radical ideas." I wonder how much we are missing out on in healthcare, because many of us are conditioned to think that a patient is a passive recipient of care, and not an equal who could actually out-think us. Golesworthy who is living with Marfan Syndrome, came up with a new idea for an aortic sleeve, which led to him setting up his own company. The article also then goes on to talk about a central repository of patient innovation to help diffuse these ideas, and this repository actually exists! It's called Patient Innovation and was set up over 2 years ago by the Católica Lisbon School of Business and Economics. The group have got over 1,200 submissions, and after screening by a medical team, around 50% of those submissions have been formally listed on the website. Searching the website for what patients have done by themselves is inspiring stuff. 

In the title, you'll notice that I also acknowledged that it's not just the patient who on their own innovates, but their caregivers could be part of that innovation process. Sometimes, the caregiver (parent, family member or someone else) might have a better perspective on what's needed than the patient themselves. The project leader for the Patient Innovation repository, Pedro Oliveira, has also published a paper in 2015, exploring innovation by patients with rare diseases and chronic needs, and I share one of the stories he included in his paper. 

"Consider the case of a mother who takes care of her son, an Angelman syndrome patient. Angelman syndrome involves ataxia, inability to walk, move or balance well. The mother experimented with many strategies, recommended by the doctors, therapists, or found elsewhere, but obtained little gain for her child. By chance, at a neighbor’s child’s birthday party, she noticed her son excitedly jumping for strings to catch a floating helium-filled balloon. This gave her an idea and she experimented at home by filling a room with floating balloons. She found her child began jumping and reaching for the balloons for extended periods of time, amused by the challenge. The mother also added bands to support the knees and keep the child in an upright position. The result was significant improvement in her child’s physical abilities. Other parents to whom she described the solution also tried the balloons strategy and had positive results. This was valued as a novel solution by the medical evaluators."

So many of us think that innovation in today's modern world has to start with an app, a sensor or an algorithm, but the the solutions could involve far simpler technology, such as a balloon! It's critical that we are able to discriminate between our wants and needs. A patient may be led to believe they want an app, but their actual need is for something else. Or that we as innovators want to work with a particular tool or type of technology, and we ignore the need of the patient themselves. 

Oliveira concludes with a powerful statement that made me stand back and pause for a few minutes, "Our finding that 8% of rare disease patients and/or their non-professional caregivers have developed valuable, new to the world innovations to improve their own care suggests that a massive, non-commercial source of medical innovations exists." 

I want you to also pause and reflect on this conclusion. How does this make you feel? Does it make you want to change the way you and your organisation approaches medical innovation? One of the arguments against patient innovation is that it could put the patient at risk, after all, they haven't been to medical school. Is that perception by healthcare professionals of heightened risk justified? Maybe not. Oliverira also reports that, "Almost all the reported solutions were also judged by the experts to be relatively safe: out of 182, only 4 (2%) of the patients’ developments were judged to be potentially detrimental to patients’ health by the evaluators." Naturally, this is just one piece of research, and we would need to see more like this to truly understand the benefit-risk profile of patient innovations, but it's still an interesting insight. 

I feel we don't hear enough in the media about innovation coming from patients and their caregivers. Others also share this sentiment. With reference to the Patient Innovation website, in the summer of 2015, Harold J. DeMonaco, made this statement in his post reminding us that not all innovation comes from industry, "There is a symposium going on this week in Lisbon, Portugal that is honoring patient innovators, and I suspect this will totally escape the notice of US media."

I am curious why we don't hear much more about patient innovators in the media. What can be done to change that? If you're a healthcare reporter reading this post, and you haven't covered patient innovation before, I'm really interested to know why.

During my research, I've been very curious to determine what analysis has been done to understand if patients are better at innovation than others. After all, they are living with their conditions, they are subject matter experts on their daily challenges, and they have enough insights to write a PhD on 'my health challenges' if they needed to! I did find a working paper from March this year from researchers in Germany at the Hamburg University of Technology (Goeldner et al). Are patients and relatives the better innovators? The case of medical smartphone applications, is the title of their paper. Their findings are very thought provoking. For example, when they looked at ratings of apps, the ratings for apps developed by patients and healthcare professionals were higher than those apps developed by companies and independent developers. For me, the most interesting finding was apps developed by patients' relatives got the highest revenues. Think about every hackathon in healthcare you've attended, how many times were patients invited, and how many times were the relatives of patients invited? One of the limitations of the paper which the authors admit, is that it was using apps from Apple's App store. The study would need to be repeated using Google's Play store given that the majority of smartphones in the world are not iPhones. 

This hypothesis from the paper highlights for me why patients and those who care for them need to be actively included,  "We propose that patients and relatives also develop needs during their caring activities that may not yet been envisioned by medical smartphone app developers. Thus, the dual knowledge base might be a reason for the significantly superior quality of apps developed by patients and relatives compared to companies." They also make this recommendation, "Our study shows that both user types – intermediate users and end users – innovated successfully with high quality. Commercial mobile app publishers and healthcare companies should take advantage of this and should consider including patients, patents’ relatives, and healthcare professionals into their R&D process." 

If you're currently developing an app, have you remembered to invite everyone needed to ensure you develop the highest quality app with the highest chance of success? 

I'm attending a Mobile Health meetup in London next week, called "Designing with the Dementia community" - they have 2 fantastic speakers at the event, but neither of them are people living with Dementia. Perhaps the organisers have tried to find people living with Dementia (or their caregivers) to come and speak, but nobody was available on that date. I remember when I founded the Health 2.0 London Chapter, and ran monthly events, just how difficult it was to find patients to come and speak at my events. How do we communicate to patients and their caregivers that they have unique insights that are routinely missing from the innovation process, and that people are wanting to give them a chance to share those insights? Another event in London next month, is about Shaping the NHS & innovation, with a headline of 'How can we continue to put patients first?' They have 4 fantastic speakers, who are all doctors, with not a patient in sight. It reminds me of conferences I attend where people will be making lots of noise about improving physician workflow, yet at these conferences nobody ever advocates for improving patient workflow. 

In the UK, the NHS appears to making the right noises with regard to wanting to include patients and the public in the innovation process. Simon Stevens, CEO of NHS England has spoken of his desire to enable patients to play a much more central role in innovation. Simon Denegri's post reviewing Steven's speech to the NHS Confederation back in 2014 is definitely worth a read.

Despite the hopes of senior leaders, I still feel there is a very large gap between the rhetoric and reality. I talk to so many patients (and healthcare professionals) who sadly have stopped coming up with ideas to make things better because the system always says No or dismisses their idea as foolish because they are not seen as experts. Editing your website to include 'patient centred' is the easy part, but actually getting each of your staff to live and breathe those words on a daily basis is a much more difficult task. Virtually every organisation in healthcare I observe is desperate for innovation, except that they want innovation on their terms and conditions, which is often a long winded, conservative and bureaucratic process. David Gilbert's wonderful post on patient led innovation concludes with a great example of this phenomenon;

"I once worked with a fabulous cardiac rehab nursing team that got together on a Friday and asked each other, ‘what one thing have we learned from patients this week?’ And ‘what one thing could we do better next week?’ We were about to go into the next phase and have a few patients come to those meetings and my fantasy was to get them to help design and deliver some of the ideas. But the Director of Nursing said that our idea was counter to the Engagement Strategy and objected that patients would be ‘unrepresentative’. Now they run focus groups, that report to an engagement sub-committee that reports to a patient experience board that reports to… crash!"

It's not all doom and gloom, times are changing. Two UK patients, Michael Seres & Molly Watt, have each innovated in their own arenas, and created solutions to solve problems that impact people like them. I'm proud that they are both my friends, and their efforts always remind me of what's possible with sheer determination, tenacity and vision, even when all the odds are stacked against you.

Tomorrow, four events in the UK are taking place which fill me with hope. One is People Drive Digital, where the headline reads, "Our festival is a creative space for people orientated approaches to digital technologies and online social networks in health and care" and the second is a People’s Transformathon, where the headline reads, "Bringing together patients, carers, service users, volunteers and staff from across health and care systems in the UK and overseas to connect, share, and learn from one another."

The third event is called Patients First, a new conference from the  Association of Medical Research Charities (AMRC) and Association of the British Pharmaceutical Industry (ABPI), where the headlines reads, "It brings together everyone involved in delivering better outcomes for patients – from research and development to care and access to treatments – and puts patients at the heart of the discussion."

The fourth event is a Mental Health & Technology: Ideas Generation Workshop hosted by the Centre for Translational Informatics. Isn't it great to read the description of the event, "South London and Maudsley NHS Foundation Trust and Kings College London want you to join what we hope will be the first in a series of workshops, co-led by service users, that will hear and discuss your views of the mental health technology you use, want to use or wish you had so that we can partner with you in its design, development and deployment." In the FAQ covering the format of the event, the organisers state, "The event will be in an informal and relaxed, there are no wrong opinions! We want to hear your ideas and thoughts." What a refreshing contrast to the typical response you might get within an hospital environment. 

The first event is in Leeds, the second is online, and the third and fourth are both in London, and I know that the first three are using a Twitter hashtag, so you will be able to participate from anywhere in the world. What I find particularly refreshing is that the first two events start their title with the word people, not patient. 

I also noticed that the Connected Health conference next month has a session on Patients as Innovators and Partners, with a Patient Advocate, Amanda Greene, as a speaker. I'm inspired and encouraged by agents of change who work within the healthcare system, and are pushing boundaries themselves by acknowledging that patients bring valuable ideas. One of those people is Dr Keith Grimes, who was also mentoring teams at the MISK Hackathon, and the 360 video below of our conversation, shows why we need more leaders like him. The video is an excerpt from a longer 9 minute video where we even discussed how health hackathons could innovate in terms of format. 

As we approach 2017, I really do hope we see the pace of change speed up, when it comes to harnessing the unique contributions that patients and their caregivers can bring to the innovation process, whether it's at a grassroots community level or the design of the next big health app. More and people around the globe that were previously offline are now being connected to the internet and/or using a smartphone for the first time. How will we tap into their experiences, ideas and solutions? Whether a patient is in Riyadh, Riga or Rio, let's connect with them, and genuinely listen to them, with open hearts and open minds. 

We can also help  to create a different future by educating our youth differently, so they understand their voice matters, even if they don't have a string of letters after their name. We are going to have to have difficult conversations, where we feel uncomfortable, where we'll have to leave our egos out of those conversations. There are circumstances where patients will be leading, and the professionals will have accept that, or risk being bypassed entirely, which is not a healthy situation. Equally, there are times when we'd probably want a paternalistic healthcare system, where the healthcare professionals are seen as the leaders in charge of the situation i.e. in a medical emergency.

The dialogue on patient innovation isn't about patients vs doctors, or about assigning blame, it's about coming together to understand how we move forward. Many of us are conditioned to think and act a certain way, whether it's because of our professional training or just how society suggests we should think. Unravelling that conditioning on a local, national, international and global level is long overdue. 

What will YOU do differently to foster a culture where we have many more innovations coming from patients and their caregivers? A future where having a patient (or their advocate) keynote at an event isn't seen as something novel, but the norm. A future where the system acknowledges that on certain occasions, the patient or their caregiver could be superior at generating innovation. A future where the gap between the rhetoric and reality disappears. 

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

Enter your email address to get notified by email every time I publish a new post:

Delivered by FeedBurner

Engaging patients & the public is harder than you think

Back in 2014, Google acquired a British artificial intelligence startup in London, called Deepmind. It was their biggest EU purchase at that time, and was estimated to be in the region of 400 million pounds (approx $650 million) Deepmind's aim from the beginning was to develop ways in which computers could think like humans. 

Earlier this year, Deepmind launched Deepmind Health, with a focus on healthcare. It appears that the initial focus is to build apps that can help doctors identify patients that are at risk of complications. It's not clear yet, how they plan to use AI in the context of healthcare applications. However, a few months after they launched this new division, they did start some work with Moorfield's Eye hospital in London to apply machine learning to 1 million eye scans to better predict eye disease. 

There are many concerns, which get heightened when articles are published such as "Why Google Deepmind wants your medical records?" Many of us don't trust corporations with our medical records, whether it's Google or anyone else. 

So I popped along to Deepmind Health's 1st ever patient & public engagement event held at Google's UK headquarters in London last week. They also offered a livestream for those who could not attend. 

What follows is a tweetstorm from me during the event, which nicely summarises my reaction to the event. [Big thanks to Shirley Ayres for reminding me that most people are not on Twitter, and would benefit from being able to see the list of tweets from my tweetstorm] Alas, due to issues with my website, the tweets are included as images rather than embedded tweets. 

Finally, whilst not part of my tweetstorm, this one question reminded me of the biggest question going through everyone's minds. 

Below is a 2.5 hour video which shows the entire event including the Q&A at the end. I'd be curious to hear your thoughts after watching the video. Are we engaging patients & the public in the right way? What could be done differently to increase engagement? Who needs to do more work in engaging patients & the public?

There are some really basic things that can be done, such as planning the event with consideration for the needs of those you are trying to engage, not just your own. This particular event was held at 10am-12pm on a Tuesday morning. 

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

Enter your email address to get notified by email every time I publish a new post:

Delivered by FeedBurner

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]

Enter your email address to get notified by email every time I publish a new post:

Delivered by FeedBurner