Ataxia Awareness at NHS Hackday, London

An Good article featuring the NHS Hack day, this past weekend
Which I had great honour to be on the judging panel and give the award for patient involvement / centricity.
While giving this award I was able to give a speech about Ataxia, to the 200 people in the audience (all involved in designing products for the NHS !

It’s 6am in the morning, and I’m awake.

This is partly down to the fact I’m sleeping on a camp bed at my brother’s home with the sunrise peeking through the curtain, but mostly because my brain has already started fizzing with ideas and excitement ahead of my second ever NHS Hack Day.

I first went to NHS Hack Day in January 2015, when it was held in Cardiff. I’d been introduced to it through tweets with AnneMarie Cunningham (@amcunningham), GP and Primary Care Director at the Aneurin Bevan Health Board, who was organising the event. Sold as an opportunity to meet like-minded hackers and geeks, I spent a whirlwind 36 hours working on GWYB – a notification system for patients which triggered communication cascades on the event of their admission to hospital. We even won the Patient Prize for our efforts.

NHS Hack Day is a free to attend event that has been running across the country at weekends since 2012. In ‘Meeting the challenge’, they ask:

How can we build an environment where world-class NHS digital services flourish?

Through leadership that understands technology and is bold enough to modernise the delivery of digital services, including embracing openness.

To this end they sent out the call to all geeks that love the NHS and bring them together in the spirit of adventure, openness, and addiction to coffee.

I arrive at 8:30 at Kings College, London, and pitch in immediately with laying out the bottle water, coffee, tea and bin-bags. Extension cables are daisy-chained together and taped to the floor. I pop my Ricoh Theta S camera onto it’s tripod and start up Tweetbot in readiness.

By 9 it’s getting busy, and 15 minutes later we’re off at pace. It’s a speed that doesn’t really drop for the subsequent 33 hours. Everyone who has contributed to the Google Document of Pitches through the week is given 60 seconds to pitch to the assembled masses. Here’s my attempt:

Yes, that’s right: I’ve just asked a room of strangers to build a customised 360 video viewing app for Google Cardboard by the next afternoon. I’m nothing if not ambitious.

The pitches range widely, from medical dictionary and haematology data visualiser, to hospital bed finder, bleep replacement, and even personal pollution monitoring. I’m suddenly aware that there are lots of other teams I’d like to join.

10:30 am and I feel like a wall-flower at a speed-dating event.

Once you’ve pitched you stand around the side of the room with a sheet of A0 paper with the project’s name on it. It starts slowly, but gradually the fact that I have a VR headset and I’m willing to share it attracts people. Several question the scale of what I’m trying to achieve, and as a result I realise that the project needs to change. With the help of some of the people the subsequently become the team, we decide to focus on using the tools at hand and skills we share to explore using VR and 360 video to help treat Phantom Limb Pain (PLP)

At this point it’s probably important to give you a little more information. PLP is a common and distressing complication of amputation. Up to 70% of people who have had an amputation can experience pain, itching, burning or distortion of their missing limb. It’s difficult to treat with medication, and as such a number of psychological and alternative therapies have been developed.

One such treatment method is MIRROR THERAPY. First described by Ramachandran in 1995, this uses mirrors to allow patients to view their injured limb as made whole again using the other limb. This has been shown to help reduce pain and distress, both during the treatment but also on an ongoing basis.

I have two patients with phantom limb pain, and even before coming to NHSHD I’d been wondering about using VR to help treat them. This weekend started to look like I might be able to make good on that.

More coffee and a time check. 11:30. We have 6.5 hours left of the day, then a further 6 hours tomorrow, to try and deliver something that will genuinely improve patient care.

My team is comprised of people with a huge range of different skills and backgrounds. Becky is a coding and digital media student from Brighton. Helen is a registered community nurse with a passion for tech and digital health. Mussadiq is a java dev with geographic information system skills. Ali a quantitative analyst. We also have Daniel and Charlotte, both software engineers. Some of the team stay for just day 1, and we’re joined on day 2 by Reno who’s switched codes from the dark side of finance to join Team Digital Healthcare. It’s an eclectic and excellent bunch – you can meet them all on our site.

©(L to R) Becky, Reno, Ali, Keith, Helen.

Given our target group, the plan is to explore using VR, 360 video, and the Gear VR headset to simulate mirror therapy in a low cost digital way. My hope is that we can develop practical methods of deploying this in a clinical setting and share our findings with the community at large. It also means we get to have fun playing with all the toys, whilst everyone gets a chance to contribute and learn something.

The team splits into three streams:

  • Charlotte and Daniel start on the website, which we will use to contain our work from the weekend.
  • Becky, Ali and Musaddiq immediately set to work on the hard coding challenge – looking at Virtual Reality and whether we can mirror a live 360 video stream from the Theta S camera.
  • Helen & I began the collation of research evidence, and constructing a ‘treatment protocol’ that we could create some simple 360 video footage of which we could test with the team.

Such is the focus of a Hack Day that many of us didn’t really realise that the excellent lunch had been served until the back of the queue bumped into our table. This was despite the food being served right next to us. I guess this was the first proof of the distractive powers of Virtual Reality.

For the remainder of the day each stream worked away on their particular tasks. The website came together quickly and beautifully, built on a wordpress framework. Becky and Musaddiq heroically tackled 2 things at once:

  • 3d modelling in Unity and then 3D Studio Max, developing some great point-of-view animations of leg therapy
  • Tests of live streamed 360 video using OBS and YouTube – this was sadly too slow, and there did not appear to be any open source mirror plugins.

Helen introduced me to Slack, a team collaboration tool that I dared to consider as yet another Social Network until I was sternly corrected. Using a technique shamelessly borrowed from the adult entertainment industry, I duct taped the 360 camera and Gorillapod to my chest to record 5 short series of basic mirror therapy clips. You can see them all here, and watch them yourselves using any VR headset. What was immediately apparent was that by watching and copying the movements you could experience an eerie sensation that the hands you were seeing were, in fact, your own (which in my case they were)

By 6 o’clock the pub and Eurovision were calling, so we all departed.

Day 2. 5:30 am this time. Ukraine won.

Another glorious day, so with coffee in hand I took a few photos of Embankment and set off to rejoin my slightly smaller team. This was offset by the fact that overnight we had been contacted by Reno, who asked to join us. Expanding the reach of the Hack Day using social media is fantastic, and something I hope they facilitate in future. As it was, our hashtag started trending shortly into day one, which was announced by the unwelcome hijacking of our thread by a russian dating agency.

By 9:30 everyone was up-to-date and the plan for the remaining 6 hours was in place. To up the pace and demonstrate the power of what we were doing to the team, we decided to utilise the ‘Cold Pressor’ test to see whether any of the content we had created could offset the pain of holding your hand in iced water.

The Cold Pressor test can be thought of as the bespectacled, serious cousin of the ice bucket challenge. It is used in research to help provide a controlled and safe painful stimulus. It has already been used, successfully, in demonstrating the efficacy of VR in reducing pain, so I felt it was justifiable to subject Becky, Reno and myself to a bit of light Sunday torture in the name of science.

Despite our rather crude efforts, what we found was quite startling. Becky & I recorded some point-of-view footage of ourselves with both hands inverted, our left arm in an empty bucket. The bucket was duly filled, and we were timed as to how long we could keep our left hand in the iced water.

*the sound of high-pitched screaming**the sound of high-pitched screaming*

Becky bowed out at 1 minute 30 seconds. I lasted even less, at 1 minute 10.

We were given a while to recover and then tried again using our personalised 360 video. What we found was that Becky increased the time she tolerated the pain to over 3 and a half minutes. I tried again and stopped at much the same time, with the feeling that I could have gone on if I wished. The sensory confusion of seeing both hands in the air versus the sensation of the left arm in water at near freezing clearly disrupted my perception of pain.

Reno stepped in next to experience the power of VR to distract patients from painful stimuli. Watching ‘Kurios’ by Cirqu du Soleil, he breezed through nearly 10 minutes of laboratory standard agony, smiling much of the time. Having checked his biography, I now see that he is an ultra-runner. This doesn’t diminish his achievement, but explains the smile.

Always keep the team happy. Or in pain.Always keep the team happy. Or in pain.

Next came the crunch. I’d cunningly ensured that 3 of the time had frozen typing hands, so we awkwardly wrote up our findings, with Becky and Ali also finding the time to crack the problem of mirroring 360 footage in a simple and effective manner. It was this last development that will really help clinicians in creating effective personalised 360 mirror content for patients, and will form the basis of the next steps I take with my own patients.

3:30 arrived, and the final presentations in front of the judges began. With a brutally marshalled 3 minutes, each team spoke of what they had achieved in the last day and a half, before being grilled by the panel and audience.

We saw a great variety of differing presentations, but what tied them together was the incredible progress everyone had made, and the amazing creativity and skill that had been used in producing extremely polished applications that were, in many cases, ready to use. I was particularly impressed by ‘Outbreak’, a disease-outbreak management system in a box that used Raspberry-Pi’s and tablets to create a pop-up field network. I wasn’t the only one: they took home the star prize. Very well deserved.

So what about Virtual Analgesia? Well, I’m delighted to report that we won a ‘Highly Commended’ prize from panel judge Alan Thomas (@alanroygbiv) for our work on Patient Inclusion. Having had the idea come from patient needs, it was high praise indeed to have this recognised.

Alan Richard, the Rare Disease Warrior, takes his battle to Virtual realityAlan Thomas, the Rare Disease Warrior, takes his battle to Virtual reality

6 pm and it was all over, bar the wrestling over the goodies and dividing up the remaining bottled water. I’d been part of 36 hours of intense team work and creativity, and joined a group of new friends and colleagues. Most importantly we had a new tool that clinicians can consider using in managing Phantom Limb Pain. In the coming weeks I hope to share this work with my two patients and see whether they’d like to try this approach. Using VR in this way means that when they wake at 3 in the morning they’ll have something new to try to control the burning pain in the foot that’s no longer there.

This post is not a speech, so I won’t go into detail about how thankful I am for the help I had from my team – I’m banking on the fact that they know this already.

What this post must be is a loud celebration of the amazing work of the NHS Hack Day group, and most of all about the incredible reservoir of passion and talent in the developers, students, clinicians and patients of this country. The challenge of rising demand and shrinking funding of healthcare is not unique to the UK, but we have a National Health Service – free at the point of delivery, with care provided based on need, not the ability to pay. The NHS Hack Days demonstrate that it isn’t just the nurses and doctors that are committed to supporting this unique and precious institution, and that we don’t go into the fight unarmed – there’s an army of geeks out there, and they have some incredible tech to share.

To find out more about the next NHS Hack Day, visit their or follow them on twitter @nhshackday – they really are amazing events, and welcome everyone with a passion for healthcare.

All the notes from my team ‘Virtual Analgesia’ are available . We’d love to hear from you with any feedback or comments. You can join the discussion on Facebook on ‘VR Doctors‘ – just apply to join.

Declaration of Interests

I attended this event in my own time and at my own expense. The hardware and software used was all either open source or owned and operated by the participating team members.