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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NHS England Citizens' Assembly - Day 1

I've just attended Day 1 of the Citizens Assembly development day organised and facilitated by NHS England with the Democratic SocietyInvolve, and Public_i. A fascinating and thought provoking day with lots of very interesting people. A big thanks to the facilitators Catherine HoweAnthony Zacharzewski and Simon Burall for a smoothly run day. I was extremely impressed by how they managed to keep the event running on time, despite the strong opinions voiced from the audience. Many of the conferences that I pay thousands of pounds to attend could learn a thing or two from these individuals. 

What is the proposed model?

model of a NHS Citizens' Assembly was to be discussed and developed during these two days. What is the purpose of the NHS Citizens' Assembly you may ask?  

From Tim Kelsey's  blog, these are the 3 intended purposes; 

  1. To give citizens and organisations a direct transparent route for their voices to reach the heart of the NHS England decision making process, in a way that cannot be ignored.
  2. To give the NHS England board and others a new source of evidence and opinion on the NHS now and future.
  3. To give the public an open and robust accountability mechanism for the work of NHS England, and opportunities to participate in every aspect of the organisation’s work.

The paper on the Citizens' Assembly can be found here. [Note: This draft outline is intended to give a common starting point for discussion, critique and positive contribution. It is not intended to be the final word on the structure and working of the NHS England Citizen Assembly, and it is not a statement of Government policy]. 

An overview of the model that was discussed today is posted on the Demographic Society's website. [Note: the wikipedia definition of a Citizens' Assembly is here]

This is definitely an admirable vision to have, and makes me proud to be British, as I don't read much about other countries who are pursuing this type of vision.  

From the Demographic Society's blog, "We are seeing the NHS Citizen as being a complete system which is actively listening to citizens via digital and other channels and then curating and developing the evidence around ideas which emerge until they are in a state to be debated at a formal assembly. The model to do this is built in three layers:

A ‘Discovery’ Layer which is doing the active listening and seeking out ideas.  This layer will also join up related ideas and while digital by default will also be responsible for making sure that the whole system is as representative as possible by actively seeking out the views and ideas of groups who are not coming forward on their own.

A ‘Discussion’ layer which will develop the evidence base around ideas and help to create actionable proposals.  When we talk about evidence in this layer we are seeking to combine different forms of evidence from a range of stakeholders

An ‘Assembly’ layer which will physically meet twice a year in order to look at discussion ideas and make recommendations to the NHS England board" 

citizensassembly.jpg
Olivia Butterworth (furthest to the right)

Olivia Butterworth (furthest to the right)

Olivia Butterworth made a remark at the beginning of the day that NHS England wants to get a direct connection to those who use services. 

We spent the morning splitting into groups and discussing each of the 'layers', and in the afternoon, drilled down into topics such culture change, agenda setting & governance. The discussions certainly showed the variety and intensity of opinions that people in each group held. The facilitators listened to what was said and plan to use the output of the discussion to update the draft paper. This is definitely not going to be easy. 

Wait a minute - surely there are existing mechanisms?

However, for me personally, a critical step has been overlooked. An audit of all the different ways that currently exist where citizens' voices can be heard. I'm curious to see the evidence used in reaching the decision to propose a Citizens' Assembly? Show me the data! I'm not convinced of the need for a Citizens' Assembly. There seems to be a myriad of routes where a patient could have their voice heard by decision makers in the NHS, which don't appear to be mapped out in one diagram as yet. I did ask in today's meeting if such a map existed, but it doesn't appear to exist. Now, I learnt so much about the NHS today, and just how complex it has become. For example, Healthwatch England, set up 12 months ago, and according to their website;

is the independent consumer champion for health and social care in England. Working with a network of 152 local Healthwatch, we ensure that the voices of consumers and those who use services reach the ears of the decision makers.

We also have Health & Wellbeing boards, and according to Wikipedia;

The aim of health and wellbeing boards is to improve integrated working between local health care, social care, public health and other public service practitioners so that patients and service users experience more joined-up care, particularly in the transition between health and social care. The boards are also responsible for leading locally on reducing health inequalities.

Additionally, I was reading about patient experience and the 2013/14 Outcomes Framework. The Outcomes Framework states;

1.43 A new placeholder indicator 4c has been included, which will be based on the Friends and Family test. The inclusion of this indicator will enable more ‘real-time’ feedback to be reflected in the framework. The Friends and Family test will ask patients whether they would recommend the hospital where they received their treatment and care, to a family member or friend.
1.44 It will be rolled out nationally starting with adult acute inpatient and A&E services in April 2013. The precise details of this indicator will need to be developed as national roll out takes place.

Are you as confused as I am? Wait there is more!  

NHS Specialised Services engages with patients and welcomes their views and experience of the services we commission. This helps us to check the development and improvement of services. Evaluating the patient experience and the quality of care received often helps the NHS to discover better ways of working. 

Someone in today's meeting talked about PEGs that currently capture patient experiences. PEG stands for Patient Experience Group, and this is an example of a PEG

I also noticed that Clinical Commissioning Groups also have their own Patient Experience surveys, such as this example by the Oxfordshire CCG. 

What I've described above is not necessarily a comprehensive audit of existing routes where a patient's voice can reach decision makers, it's just what I found in my research this evening. The question that remains unanswered for me is 'Where is the GAP in existing services and mechanisms for capturing feedback from patients?'.  

Risk of missing patient voices

Another problem that I see with the proposed Citizens' Assembly model is the government's digital by default agenda.  

Looking again at the paper, and picking out a few areas of concern for me, within the 'Discovery' layer.

To be actively (and persistently) listening to public conversations (usually on digital channels) that relate to the sphere of influence of NHS England and to ensure that these are visible across the discover space;  
Online/offline bridges, enabling the content and conversations from the Discovery layer to include and be included in offline events, will need to be developed. 
This is a digital by default approach, underpinned by work to ensure that this approach does not exclude those who are not able to participate online.

Being a data person, I did quote several statistics in today's meeting. 7 million people in the UK have NEVER used the internet. Whilst 99% of those aged 16-24 have used the internet, only 31% of those aged 75 years and over have used the internet. Given that the NHS's biggest challenge is chronic disease management, which age group do YOU think is likely to be a bigger user of NHS England's services? 

It's not just me. The National Audit Office has warned the UK government that it's digital by default agenda could exclude more vulnerable members of society who don't access the internet. Their survey found many of those who have never been online are poor, elderly or disabled.  

Another shocking statistic. Only 20% of care homes in the UK offer internet access to their residents. 

According to Twitter UK, there are 15 million 'active' Twitter users in this country. When I quizzed them on how they define active, this was their response. I wonder how many smartphones are logged into Twitter simply because the device was switched on that day. I'm curious if that instance of logging in is counted as 'active'?

The digital divide is not something that can be just dismissed. In the 21st century, it has to be taken seriously. Whose voices are we at risk of ignoring? Can monitoring of digital services really provide the 'truth' about public opinion? Are we at a point with these digital tools where we can find the 'signal' within the 'noise'? Can we really bridge the gap between 'online' and 'offline' without spending lots of money? 

Don't get me wrong, I love technology, and am passionate about how it can serve all of us in healthcare. However, I'm also conscious that new technologies can often appear so 'sexy' that we forget to ask critical questions, such as, 'Where is the evidence that these data are accurate and representative?'.

Do we need to go back a few steps?

I'm struggling to see the justification for the discussion and development for a proposed Citizens' Assembly at this moment in time, when I do not have clarity on what currently exists, and where the GAPS are. A critical step in the process appears to have been omitted, and it's left me extremely confused. When the meeting finished today, it felt to me as if this discussion was too early. An advert I spotted at a US airport captures that feeling. 

I recognise and appreciate that NHS England and others have put a lot of effort into the process so far, including the workshop in July and organising these development days. There were many people in the room today who have much greater experience and wisdom in the area of the NHS, and perhaps they reached a different conclusion to me. I'd love to hear your perspective after you read this post (even if you were not at the meeting or watching the webcast).

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