The power of grassroots communities to transform health & social care

I hired the function room in this London pub for the first two events I ran! 

I hired the function room in this London pub for the first two events I ran! 

Just over 2 years ago, as a volunteer, I founded the Health 2.0 London Chapter, which has since grown to over 630 members and has become the largest health tech grassroots community in the UK. I'm going to share why I did this, the experience & the impact on health & social care in the UK. 

 

 

The need for diverse grassroots communities

I've wrote in my first ever blog post about how starting the Health 2.0 London Chapter was part of me venturing out from GSK into the unknown. I observed that events in healthcare were often very expensive to attend & either focused on the tech, or the clinical aspects, the NHS, or investment opportunities. Nothing wrong with that, but there wasn't one space where all those groups could come together, with a genuine focus on the patient. I've always enjoyed bringing diverse groups of people together, whether it's at work or outside. At the end of my recent trip to Boston in the USA, I hosted a 'mindful' dinner for 10 amazing people that didn't know one another, some of whom I'd never met, but had formed friendships on Twitter. 

Back to Health 2.0 London, the turning point was the event I ran in Nov 2012 on 'Disruptive Innovation in Clinical Trials'. I decided I wanted to try having a real patient start the event, by sharing their experience of participating in a clinical trial. We had the wonderful Jeri Burtchell, a patient from the USA share her story in a Skype video call, displayed on the big screen in the venue.  

During the Q&A after her talk, I witnessed men & women from the audience coming up to my laptop, and giving feedback to Jeri via the webcam, with tears in their eyes. Yes, Jeri's stories of her experience of clinical trials as a patient was something many in the audience had never heard, despite many of them working in the field of clinical trials. Her fears, her concerns, & her hopes for the future, shared with a group of strangers in London. We then had an industry expert speak, followed by a startup. 

After the 3 talks finished, what was magical was witnessing the new conversations between people who might normally never meet. A mobile app developer, an academic & a clinical trials expert, exchanging ideas on how they might work together to improve the patient experience during a clinical trial. It was incredibly rewarding to witness this unique energy at an event I'd curated. Don't take my word for it, you can read the reviews of the Chapter by attendees here.

I curated and ran 20 Chapter meetings since I founded the Chapter, with the help of Mateusz Tylicki, my assistant organiser. A wide range of events, with just a few memorable events listed below;

Information Obesity: A possible side effect of Digital Health?

Care Homes: How can data & technology impact the lives of vulnerable patients?

Digital Health in UK hospitals: Hope or Hype? 

You can't do it alone!

I'm fiercely independent, and don't like to rely upon anyone, but I learnt that you have to be humble enough to ask for help. Special thanks to Mateusz Tylicki who helped me with every event, and each of the speakers who shared their time, expertise & insights (for free) with the Chapter. Ultimately, it was the people who coped with travels through London rush hour to attend our events on Wednesday evenings, that helped build a healthy and vibrant community.  In the beginning, as the community grew, I couldn't continue to hold the meetings above a pub in London, I needed a proper venue. Dawson King, a UK healthcare entrepreneur was our first sponsor, and helped us when we needed it the most.

Most recently, it was David Dowe at the ICT Knowledge Transfer Network (itself funded by the Technology Strategy Board), who approached me back in 2012 and offered to support the Chapter by providing a venue & food/drinks for nearly every event since Nov 2012. 

I believe there are now over 70 Health 2.0 Chapters around the globe, and I got to know other Chapter Leaders such as Eugene Borukhovich (Amsterdam), Sebastian Yuen (Birmingham, UK), Alex Fair (New York), Liam Ryan (Dublin), Ben Heubl (Copenhagen), Juliane Zielonka (Berlin) & Idalia Dawidowska (Manchester, UK). Each of them inspired me to keep pushing the boundaries!

Finally, a big thanks to Matthew Holt, Indu Subaiya & Pascal Lardier from Health 2.0 for their support along the way! 

What else helped build this community?

  • Having small meetings with a clear focus. I attended many tech meetups in London, some of which had up to 200 people attend. I wanted to create something different with Health 2.0 London, a more intimate dialogue, where it's possible to talk to everyone during the course of the evening. That's why I capped attendance at 40-45 people each time. 
  • Placing filters on who can join the Chapter. The Chapter was managed via meetup.com, and anyone wishing to join the Chapter had to answer a few questions when applying to join the group, and I would review each application personally. With experience, I learnt how to spot applications from those people genuinely interested in being part of this grassroots community. 
  • Not charging for attendance. I never once charged people to attend. My desire was to give everyone a chance to participate in this community, especially students, & others with limited finances.  

So, what was the impact on UK health & social care? 

Enough about me, how did people benefit from being part of the Chapter? I've included a few quotes below. 

"The ICTKN was delighted to support the growth of Health 2.0 London. When I first met Maneesh, I could see that he really understood the need for a new community in this area, and was prepared to put the hard work into finding speakers and building interest, so we were really happy to support his efforts. 

We’re very glad that its turned out to be such a success - its vital that this community continues to meet, to understand the opportunities which Digital Health presents and to continue to challenge accepted wisdom in health” - David Dowe, ICTKTN

"The meetings have been stimulating – brain food. I’ve met interesting people, useful contacts and seen new opportunities for research, including a letter of support from Maneesh for a PhD programme in Digital Health. Maneesh has been a visionary Chapter leader, constantly challenging accepted paradigms and raising thought-provoking topics for discussion." - Dr. Jacky Pallas, Director, UCL Research Platforms

Bruce Hellman

Bruce Hellman

"It's an incredibly exciting time to be a Digital Health start-up, with a massively growing market and a hugely supportive and encouraging ecosystem developing.  Fora such as the London Health 2.0 meetup group have really crystallised the ecosystem and network, and presenting has certainly helped us develop new relationships and gather new insights." - Bruce Hellman, co-founder & CEO, uMotif

 

 

 

 

 

The future of Health 2.0 London 

It's been extremely rewarding, but it's taken a lot of effort to get to this point. I put my heart & soul into everything that I do, whether I'm being paid or volunteering. 

Cristina de Juan

Cristina de Juan

Now that I'm becoming a lot busier with my own consultancy work in Digital Health, I recently stepped down as Chapter Leader. It's also good to give new people to bring fresh leadership to the community. 

There are two new Chapter Leaders, Mateusz Tylicki & Cristina de Juan, and I have every confidence they will do a fantastic job taking this community to the next level. 

"I'm very excited about the opportunity to take the Health 2.0 London Chapter forward. My aim in this role is to bring healthcare innovators together to ensure the UK is a leading country in Digital Health, with the ultimate of goal of helping patients." - Cristina de Juan, VP Clinical Partnerships, TrialReach 

Cristina & Mat did a sterling job at their first event last week which questioned the true impact of giving patients more data! 

In a brilliant Wired UK article, Ben Heubl, observes that Boris Johnson [Mayor of London] recently launched MedCity, an initiative to build the world's most powerful life sciences cluster, which appears to neglect the emerging Digital Health sector in London.

Could this gap in official support be an opportunity for a grassroots community like Health 2.0 London? I'm convinced through first hand experience that grassroots communities can make a difference in health & social care. It doesn't have to be technology that is the main focus, it's simply about bringing people together, discussing real world problems and creating a safe environment where people can express themselves & share (often radical) ideas without fear of being judged. 

What's next for me? 

During my visit to Boston, a reminder in a restaurant of the perception that there are differences between the 'Old World' & the 'New World'

During my visit to Boston, a reminder in a restaurant of the perception that there are differences between the 'Old World' & the 'New World'

As an entrepreneur, it's fun to experiment and try new things. I'm increasingly finding that clients are approaching me with particular problems because they view me as the bridge between the 'old world' of healthcare, and the 'new world' of Digital Health.

I recently spent a week in Boston, USA [which London's MedCity is aiming to compete with], and found it a very enlightening visit.

I met one Digital Health entrepreneur there, who remarked, "London?! Don't you feel limited there? In Boston, we believe that anything is possible."

Indeed, there still seems to an 'Old World' mindset in Europe that seems to lead to less risk taking, but it's changing.

My mind is very restless, and comes up with new ideas all the time! As someone with a data background, I'm becoming increasingly curious about how Open Data could make an even bigger difference in healthcare & social care. 

I'm delighted to be part of a panel discussion in London on April 30th 2014, 'Facilitating Innovation with Open Health Data', hosted by the Connected Digital Economy Catapult.

It's free to attend, and whilst primarily aimed at SMEs and Digital Health startups, anyone with an interest in Open Data & the Digital Economy should definitely consider attending. I'm hoping the event & subsequent discussions will help stimulate new ideas, new startups & new solutions that can ultimately help patients and remind us that the 'Old World' can still generate world class innovations. 

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Highlights from Health 2.0 Europe

At the start of this week, Health 2.0 Europe began. Previous held in Berlin, the event has now moved to London. Having been to Health 2.0 Europe last year, Health 2.0 Middle East and Health 2.0 Silicon Valley this year, I was pleasantly surprised to see many new faces at the event. I didn't recognise the majority of delegates.

Great to see such enthusiasm, and looks of surprise and amazement on people's faces as they watched demos on the stage. I've seen so much in this space myself through running the Health 2.0 London Chapter, that I didn't see what the fuss was about. I then realised that I'm part of a bubble. Whilst being able to use an app for medication adherence may seem 'normal' to me, for the vast majority of people, it's still something they've never seen before.

I wasn't able to attend every session, so these highlights are from sessions I did attend. Additionally, if you want to get a flavour of Health 2.0 Silicon Valley, you can read my posts about Day 1, Day 2 & Day 3.

Day 1

Back to London, in the first session, Improving and Enriching the Patient-Provider Relationship, 3 out of the 4 demos were from US companies. That led to some in the audience feeling surprised.

However, the reality is that there are far fewer companies in this space in Europe vs the USA, even fewer when you are looking for high quality companies with a high quality product or service to demo on stage. Whilst the conference could have perhaps had only EU companies on stage, the conference would have probably been over by mid-afternoon on Day 1.

As part of the first session, it was encouraging to see a real patient on stage sharing their experience.

Next up from NHS England, were Tim Kelsey and Geraint Lewis giving a double keynote on what's happening with NHS data. Care.data is one of the big initiatives that was mentioned. For a fascinating and thought provoking article on care.data which just was published yesterday, take a look here.

The session on Health 2.0 for the brain was well received. Jon Stamford, himself a Parkinsons' patient said that the best app is the one that people will want to use. So true.

We had a session called NHS Compass with Alex Abbott and Tracey Watson who shared their one year plan to open the NHS up for business. One great question from the audience was whether NHS England would have any influence over the local trusts to buy products & services from SMEs? It didn't sound like they have any influence, and the question was for the most part, avoided. We heard from Tracey that NHS England are likely to set up a 'Centre of Excellence' and new processes and procedures as part of the plan to help entrepreneurs navigate the NHS. Many entrepreneurs in this space have left the NHS to pursue their ideas without getting entangled in bureacracy, processes & procedures. To be fair, the NHS is extremely complex, it employs 1.7 million, and it's going to take time to change such a large organisation. Could you or I do a better job of opening up the NHS to startups? Maybe, maybe not. The task of doing so is immense, so kudos for the NHS for starting to change. 

However, myself and other entrepreneurs aren't interested in hearing about the IT failures of the past, or the internal problems facing the NHS today. They simply want to know exactly which person they need to speak to if they have an app that could help the NHS. They want to know what tech solutions the NHS is willing to pay for. Why doesn't NHS England have one website that lists all the current 'wants', just like GSK Consumer Healthcare does?

Now, when it comes to the catering at Health 2.0 Europe, many delegates told me how they were impressed with the food. However, Inga Deakin's tweet during one coffee break made me smile. Even when I worked at GSK, vending machines were stuffed full of fizzy drinks, chocolate bars and crisps.

One of the most inspiring sessions of the entire conference for me was the 'Empowering patients session'. The audience loved hearing from Maria Gjerpe, a patient from Norway who raised $1.2 million for a clinical trial using crowdfunding. Now that's what you call courageous leadership. We need more people like her within the healthcare system itself. More on here story here.

Day 2

The first session was on Sensors & Tracking: Quantifying the Self & Listening to Your Body. One of the speakers, Adriana Lukas who runs Quantified Self London, pointed out that whilst self-tracking leaders to greater self awareness, most people stop tracking after 3 months. I heard a new term mentioned during this session, Email Apnea. Yes, many of us stop breathing whilst reading an email.

In the session on Health 2.0 Tools for Doctors & Hospitals, we heard from Chris Farmer on how it can be a challenge for doctors in the hospital to share data with each other, i.e. medical photography due to consent models. Chris also told us that sometimes, they have to use 7 or 8 different software applications to view data in a single clinic. When I hear from people like Chris, I realise that we have people on the inside of healthcare systems who are equally as frustrated with the status quo when it comes to not having access to the right technologies.

Many of us have ideas but we often need someone to invest in our idea. Financing Health 2.0: Who's Stepping Up? was a fascinating and candid discussion. It is very challenging here in Europe. Every time a startup in Europe asks me about getting funding, I remind them of something I read in the Startup Genome report published in Nov 2012, "Even developed ecosystems such as New York and London have more than 70 percent less risk capital available than Silicon Valley". When you add the scarcity of risk capital, the fear of failure, and the challenges of doing business with the NHS, I don't find it surprising when I see European entrepreneurs heading to the US in order to follow their dreams. I find it sad, that after quitting my job in 2012, and becoming a consultant in the field of Digital Health, I still don't have any clients in the UK. The only organisations who pay me to work for them are all outside of the UK. As much as I'd like the country of my birth, the UK, to succeed and prosper, I now encourage any startups that ask for my advice, to also consider either Silicon Valley or an Emerging Market. There are even entrepreneurs in the UK who give up on their ideas here, since they aren't likely to make any money from them. 

A great talk from Richard Smith, about the rise of chronic disease in the world, and that a lot of patients don't take their drugs. Many in the area of Digital Health see apps as a possible path towards behaviour change. I remain unconvinced, and this post by Nir Eyal on why behaviour change apps fail to change behaviour is one of my favourite things I've read in 2013.

The final session of the day was Not your mother's Health 2.0, covering the topics that health tech conferences don't actually have on the agenda. I loved all of the demos. Mark Steedman, an expert in End of Life Care, remarked that we don't study how people die. He also told us that most people want to die at home, but actually die in hospital. Mark challenged the entrepreneurs in the audience to develop technology that could help End of Life Care.

Ever wished you could check how much alcohol is in your blood before you drive a car? Dr Gautam Mehta has developed a gadget that plugs into the headphone jack of your phone that will allow you to do that.

So, what was it like?

In conclusion, fascinating to see how much this scene in Europe has progressed in just a few years. It's encouraging for those that want to support European entrepreneurs, and inspiring for those who have ideas but have yet to make the jump into doing their own startup. The Twitter stream was very active at this conference, and I hope that this event has triggered new conversations here in Europe. I was impressed to see how much energy there was during the final coffee break of the conference. One suggestion for next year is to have a patient in each session. I believe having a patient in each session would provided much needed insights into what they actually need (and want to use!).

Lots of energy during the final coffee break on Day 2

Lots of energy during the final coffee break on Day 2

We can come up with so many innovations, but the ultimate question is, "Who is going to pay for it?". Whilst many of my friends have left Europe to either head to California or an Emerging Market, there are rays of hope here. One UK startup, uMotif, was on stage twice at this conference. Once in my pre-conference workshop on Sunday, and again on Monday on the main stage. I remember when I invited them to demo at my Health 2.0 London event on mHealth back in September 2012. It's been amazing to see them go from strength to strength. Just recently, they beat hundreds of other startups to win Cisco's British Innovation Gateway award, with a prize package worth $200,000.

So, it IS possible to succeed without being in Silicon Valley.

Can't wait until Health 2.0 Europe 2014? We have 3 Chapters in the UK. Health 2.0 Manchester & Health 2.0 Birmingham. In terms of the Health 2.0 London Chapter, which I run as a volunteer, we now have 540 members. I've already scheduled 4 events for 2014. A big thanks to the ICTKTN for sponsoring our events. The events are kept small as we've found it works well in 2013. If you are interested in attending, don't be put off by the fact that all of the events are full. Join the waiting list, as many people registered can't attend due to work & family, so people on the waiting list usually get a space. 

  • Jan 22nd - Digital Health: How do we avoid 'Digital Exclusion' in Health & Social Care? 
  • Feb 19th - Digital Health in UK hospitals: Hope or Hype?
  • Mar 18th - The Internet of Things: Could this be the catalyst for innovation in the NHS?
  • Apr 16th - Does giving patients more data actually increase engagement & improve outcomes?

[Disclosure: I have no commercial ties with the companies listed above, apart from Health 2.0, which uses me as a consultant from time to time]

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