Putting patients at the heart of innovation in the NHS – Responsible or reckless?

It was fascinating to be part of the Healthcare Innovation event hosted by Westminster Forum projects last week. After the death of his wife from ovarian cancer, Lord Saatchi felt crushed by the ‘medieval’ treatment that cancer patients must endure. It drove him to launch a Private Member’s Bill in the House of Lords, which seeks to promote medical innovation and reduce doctors’ fear of litigation in the event of something going wrong. Is it right to give doctors license to experiment on their patients with unapproved treatments, even if they have the best of intentions? Is the distinction between responsible innovation and reckless innovation so easily made?

I used to think that having worked in GSK when it had approximately 100,000 employees, I’d experienced the challenges of innovating in a complex and regulated environment. However, the NHS employs more than 1.7 million people, and deals with 1 million patients every 36 hours. According to the NHS website, only the Chinese People’s Liberation Army, the Wal-Mart supermarket chain and the Indian Railways directly employ more people!

The more I learn about the inner workings of the NHS, the more respect I have for the hard working men and women who help deliver care to patients. It can be tempting to poke holes in NHS strategies from an external perspective, but I recognise that NHS leadership has to routinely make very tough decisions, particularly when evaluating the risks and benefits of new products & services. 

Many of the solutions we all desire for the NHS won’t arise by employing the same thinking we’ve always used. There has been significant change in recent years, and there is much more change still to come, at least from a technology perspective. When I meet innovators in Silicon Valley, they are intent on ‘disrupting healthcare’ and developing ‘algorithms’ and ‘software’ that will in theory, replace much of what a doctor does today in terms of diagnosing diseases. Then there are the multitude of startups around the globe developing mobile health apps, many of which claim to trigger ‘behaviour change’. When the pharmaceutical industry is largely focused on treatment, what will the impact be for them, if the NHS can one day use new technology to operate ‘beyond the pill’?

Indeed, Happtique in New York have been trialling prescribing health apps to patients. The Internet of Things promises us a world of billions of devices connected to the Internet, from our cars to our fridges to our clothing! Yes, the possibility of gathering streams of real-time data from a t-shirt embedded with health sensors. Google just announced the launch of Helpouts, which could one day bring telemedicine to the entire globe.

Given the biggest challenge for the NHS is chronic disease management, these advancements could make remote monitoring of the elderly a reality, except that today, 80% of care homes in the UK don’t offer internet access to their residents. 7 million people in the UK have never used the internet, many of which are poor, disabled or elderly. The Digital Divide could result in multiple tiers of innovation, not accessible to every patient.

For many people in society, these technologies could offer patients the chance to be much more in control of their health, to be more informed and to be more independent. I believe both patients & entrepreneurs will not wait for the establishment to catch up with trends in technology.

To be fair, there is a huge amount of froth and hype in Digital Health, often with limited or no evidence. There are many pioneers, but also many cowboys. The regulatory framework we use for evaluating these Digital Health technologies will have to be different from existing regulatory frameworks. We might not even get things right first time around, as this is a new area for everyone. However, we can’t let fear of failure hold us back. Many people in health & social care, particularly doctors and other leaders, are afraid at the prospect of Digital Health technologies coming into the NHS. It’s only natural to be fearful, if your own future may be at risk.

However, given a choice, I’d rather have medical professionals afraid of new technology rather than patients afraid of not having access to the latest technological innovations. Whilst we may not be able to help the patients of yesterday, such as Lord Saatchi’s late wife, I sincerely believe by continuing the open and mature debate, we could help the patients of tomorrow.

“Courage is not the absence of fear, but rather the judgement that something else is more important than fear.” - Ambrose Redmoon   

8 reasons why FutureMed changed my life

In Feb 2012, I had resigned from my job at GSK but was working my notice period. I was dreaming of a yet to be undiscovered future. I'd spent almost two decades working either in the research or marketing functions of a variety of organisations. Those two functions are the parts of an organisation which are constantly thinking about the future. 

I remember finding the FutureMed (FM) website one day, and I said to myself, "This looks amazing, it would be a dream come true to get admitted". I shared the link with a few colleagues who rolled their eyes, and questioned what I would get from hanging out with some 'space billionaires' in California. In the same month, I was told by someone higher up the food chain at GSK, to remove the word 'Disruptive' from the meeting on 'Disruptive Innovation' that I had scheduled, because the word 'Disruptive' was kinda scary for them. These attitudes, beliefs and cultural norms played a big role in my desire to exit one of the largest pharmaceutical companies in the world, and search for other free thinkers who weren't afraid of exploring new technology. 

Friends of mine in California urged me to apply to FM, saying that my crazy & radical ideas that seemed to terrify everyone in the UK & Europe, would be not only be welcomed, but warmly encouraged at Singularity University (SU). So, I applied, and got admitted. One of only two people from the UK, I might add. I attended the 6 day program in Feb 2013, which cost me $8,500 just for the program. Over the last 8 months, people ask me all the time, was it worth it? What did you get from it? Should I attend the next FM? That's what compelled me to write this blog post, so my experience could reach a wider audience. 

The 8 reasons

 (Not ranked in any particular order)

• #1 I'm now getting paid work as a Digital Health Futurist - I've always been more interested in the future, rather than the past or present. Since leaving my job, I've worked hard to research the latest technologies, and stay right on the edge. FM took me to a whole new level and gave me the confidence to start my own blog, deliver my first TEDx talk, and give talks and workshops on the future of Digital Health. In fact, some of my clients have told me part of the reason they first contacted me was just because I'd been to FutureMed! 

• #2 Opened my eyes to new possibilities  - Robotic surgery, 3D bioprinting, Synthetic Biology, Regenerative Medicine, and Neuromedicine & more. I'm not necessarily an expert in these areas after FM, but it's helped me become aware of what these exponential technologies are about, where they are heading and how they may potentially change the world. The program is extremely well curated. It was the passion and energy of each of the speakers who brought these new technologies to life for me. I wish I had teachers like that when I was in school. 

Virtual simulation with Da Vinci robotic surgery system

• #3 Hands on experience with the most amazing technologies - I'll never forget how I got to play with the Da Vinci robotic surgery system, make a 3D printed iPhone case, or be in a group picture which was taken by a camera mounted on a UAV flying above our heads. I was fed up of reading about these technologies in blogs & articles, I wanted to see them up close with my own eyes. I don't believe I could have experienced this anywhere apart from SU.  

• #4 Enlarged my network in Silicon Valley  - You know the saying, it's not what you know, it's WHO you know? Despite all the optimistic press releases about New York, London or Berlin being the next Silicon Valley, there is only ONE Silicon Valley. In my opinion, the Valley will continue to dominate the world in technology, at least for the next decade or two. There is just an incredible energy there. It's the only place I've ever been to where not only are people passionate about 'changing the world', but they are actually doing so too! You come into contact with so many inspiring people during the program, in addition to the awesome faculty.  

• #5 Fellow students have become friends -  I spent 6 long days with 80 other students from 20+ countries. Some were entrepreneurs and some were employees of large organisations, it was a good mix. Despite having travelled to 44 countries, I met people from countries I've never been to, such as Brazil and Argentina. I was surrounded by people so much smarter than me, and it led to wonderful debates about the future of healthcare. I've kept in regular contact with some of the students, who have now become friends. Before I left FM, we were told that we were now part of the SU 'family', and each of us got our own SU email address! I went back in August 2013 to SU for the Alumni Reunion & the 5th birthday party of SU [I learnt that most students at SU are from the USA, but the second biggest group is from Brazil]
  

A talk in the main classroom by Vinod Khosla

• #6 Rewired my brain - SU has a nickname, 'Sleepless University', and I found that out on Day 1. I remember speaking with the SU ambassador for Saudi Arabia (Yasser Bahjatt) at TEDActive 2012 (which itself is described by attendees as the ultimate brain spa), and he told me that SU was like TEDActive on steroids. Classes at FM started first thing in the morning, and finished in the evening, interspersed with field trips. My mind was stimulated so much, I'd often stay up till 1 or 2am, discussing the day's learnings with other students. I haven't had a learning experience like that anywhere else but it was seriously hard work. Fortunately, SU provided the tastiest and most nourishing selection of food & drinks of ANY event I've attended.  
  

• #7 Got a free reality check - Towards the end of the program, an unconference was held one evening. I shared my idea and I didn't get many positive comments. I was immediately asked about the business model and who it would benefit. At the time, it felt like folks there didn't get my idea. However, with the benefit of hindsight, I realise that the hyper-focus of people in Silicon Valley was actually a sorely needed reality check. That's helped me refocus my ideas and dreams during 2013. 

• #8 It's opening so many doors for me - This week, I will be attending two events which are both invitation only. The first is the very prestigious Westminster Health Forum's seminar on Health Innovation where I am actually speaking, and the second is the inaugural Internet of Things World Forum, where I'm a delegate. I'm convinced that attending FutureMed helped in securing these two opportunities.   

The class of FutureMed Feb 2013 in our scrubs! I'm in the top-right hand corner with sunglasses. 

A student had printed this out in the Innovation Lab

I made it to the end of the program!

However, FutureMed is not perfect

I recognise that FM is a relatively new program, but there were elements of FM in 2013, which for me, were not great. The biggest issue was the intensity of the program. There is SO much packed into each day, and so little time during the program to digest all that material. I would have preferred not just more breaks, but longer breaks to allow more time to exchange ideas with other students. Not everyone has the stamina to stay up to the early hours of the morning. I appreciate that the faculty want to help you to get value out of your time there, but there were moments when I just wanted some down-time, where I could go for a walk without having to miss a class. 

You hear the term exponential technologies used a lot at SU. In fact, it's over-used at some points. 

The session on Global Health was on the last day and just 2 hours long. Personally, I'm really interested in how technology can impact 7 billion lives, not just those who are in the richest nations. I hope the organisers make that section of FM much longer in the future. 

SU wants to impact a billion lives. One might argue, why are they based in the USA? Surely, SU could be based in the place where those billion people are, such as rural Africa or rural India?

I've had difficulty explaining to people that despite the name, SU, is not an accredited university. Others point out that SU is sort of a cult, you get brainwashed or that it runs overpriced elitist networking events. One could argue that the people who spend 2 weeks camping outside Apple retail stores to be first in line for a new version of the iPhone are part of a cult. One could also argue that programs such as TED are also overpriced elitist networking events. 

Astronaut space food. In case you're wondering, it looks better than it tastes. 

Overall, the positives far outweighed the negatives for me, and the experience HAS changed my life, and continues to change my life. The next FM is being held in Nov 2013 . Alas, I won't be able to attend, and I'm curious how the experience will be in San Diego, away from the SU Campus. One of the benefits of attending FM earlier this year was that it was based at SU. Growing up in the 70s with Star Trek, and then following the progress of the Space Shuttle in the 80s, it was a really special treat to be on campus at NASA Ames Research Park. Leaving campus back into the real world, I purchased some Astronaut space food. As amazing as going into space might be for some people, I'd miss the food on Earth.    

Some more pictures I took at FM are in the slideshow below.

[Note: I have no commercial ties with any of the organisations mentioned above]

When I turned up to Singularity University, I was greeted by a virtual human!

Daniel Kraft & Robin Farmanfarmaian, our two hard working hosts at FutureMed

The legendary Ray Kurzweil

Close up and personal with Peter Diamandis

Daniel Kraft - he puts his heart & soul into this program

Brad Templeton telling us about self-driving cars

Amazing food options to keep you going

Lunch time, more amazing food!

The wonderful Larry Smarr 

This is where I first met the infamous Jack Andraka

Snap of my iPhone case being 3D printed

David Ewing Duncan & The Experimental Man project

Raymond McCauley, co-founder of BioCurious

Atul Butte - he was one of the most passionate speakers

Ajay Verma informing us about Neuromedicine

All those mobile EEG apps!

Catherine Mohr - robots in surgery

Surgery 101 - suturing a Pig's Foot with Shawna Pandya

Despite never going to Medical School, I felt like a doctor for one day!

Marc Goodman - he really got me thinking about privacy & security of our health data

Off-site design workshop held at IDEO headquarters in Palo Alto, CA

Daniel Kraft giving us an overview on how human organs one day may be printed by 3D printers

Jonathan Sackner-Bernstein - who created the FDA-DARPA partnership

Justin Pickles from Purdue Pharma - this practical workshop was really good fun

Walter de Brouwer, founder of Scanadu, building a medical Tricorder

Hello mum! Look where I am. 

NHS England Citizens' Assembly - Day 2

Well, I made it back to Day 2 of the Citizens' Assembly development day. To be candid, after writing my post about Day 1, I almost felt like NOT coming back for Day 2. Why? Well, I was presented with no compelling need for a Citizens' Assembly. So, what contribution could I make to a proposed model that I'm not sure is actually needed?  

In the end, I attended Day 2, with my confusion and skepticism in tow. Again, kudos to the facilitators & the other attendees who worked into the night once Day 1 had concluded, to revise the draft paper based upon the sentiments expressed on Day 1. The revised paper can be found here.

Anthony Zacharzewski [facilitator] curating the Open Space lineup

After the opening remarks, we were told about the 'Open Space' session during the morning. A chance for attendees to lead discussion groups, based upon topics 'pitched' to the room rather spontaneously. Similar to an 'unconference' that are prevalent at technology events. We were invited to pitch the questions that WE felt were important and needed to be discussed further. Questions pitched included culture change, truth to power, inclusive membership, and lowering the bar for evidence. My question was about understanding the gaps in existing patient voice mechanisms. Another attendee, Avril Davies wanted to discuss avoiding duplication with existing services, so both our questions were merged into one discussion group. Each discussion group, had it's own room, and approx 60 minutes to debate, discuss, argue and hopefully move forward with some action points. 

I think here I was describing the scale of the problem! Photo by Ruth Beattie [Yes, that's a genuine Hawaii shirt that I actually purchased in Honolulu]

In my group, I thought it would be really quick and easy. Let's just map out what existing patient voice mechanisms exist, establish what works, what doesn't work, and determine if there really is a gap that needs a Citizens' Assembly. It wasn't THAT easy! The group discussion was extremely lively, and I was frequently astonished by the collective wisdom and experience shared within the group [Sidenote: How does NHS England harness that combined wisdom and experience at a grassroots level across the nation?]  

I believe the map of existing patient voice mechanisms had already been started during the evening of Day 1 by those awesome facilitators. Our discussion group added a few more to the map on the wall.   

Some of the existing patient voice mechanisms

More existing patient voice mechanisms

So what did our group conclude?  

1. An audit of existing services and systems is required. Just how many ways in which patient voices can be captured currently exist? A SWOT analysis to prevent wasting taxpayer money on new systems. How many patients use each service? How much money does each cost to run? Are they effective? If not, why not? Can they be tweaked in any way to be effective? [Note: Personally I believe NHS England should have these metrics, regardless of the debate about a Citizens' Assembly]

2. All these current routes may not be delivering a powerful democratic voice.

3. Existing channels are collecting patient feedback but not necessarily enabling patient participation at a national level.

4. Patient feedback at the moment may not always get a response from the system.

5. No one central place in NHS England for feedback/questions from patients. Why can't there simply be one 'customer service' department just like a chain of supermarkets? Patients may be simply be confused about where to currently give feedback, as there are so many different routes.  

6. Aggregate, Amplify and not Duplicate.

At the end of the discussion, I asked the group, "Should we be talking about a Citizens' Assembly at this point in time?".  Out of 9 people, 2 said 'Yes', 3 said 'Some concerns', and 4 said 'Serious concerns'. [Note: I was in the last group]

Tim Kelsey sat in one some of the discussion groups (not mine though), and after the 'Open Space' sessions were over, he spoke for 15 minutes. Tim told us that some very senior leaders in the UK government were following this event on Twitter. I guess this Citizens' Assembly idea has high visibility then? Tim also said "The Citizens Assembly should not just have impact, but 'authentic' impact", and "It's about having a grown up conversation about this commissioning thing with people who use health & social care". One of his most powerful statements was "one of the key reasons for having a Citizens' Assembly is to hold NHS England to account".

This was MY immediate response on Twitter to Tim's talk.  

It's great that @NHSEngland want to be held to account by citizens on commissioning, but who REALLY understands commissioning? #NHScitizen

— Maneesh Juneja (@ManeeshJuneja) October 23, 2013

After lunch, each of the attendees who had facilitated an 'Open Space' group were invited to share their conclusions. Once again, congrats to the facilitators for politely but firmly making sure each person didn't go past their allocated 5 minutes. Four attendees are shown in the pictures below. [left to right], Fiona Carey - lowering the bar for evidence, John C - truth to power, Carol Munt - Inclusive membership, and Simon Blake - will this lead to better outcomes? 

Simon Burall leading a shared pause to allow us to reflect upon the intense conversation

By the time everyone had shared their conclusions, Simon Burall could see how tired everyone was and ended the meeting ahead of schedule. Again, this is a sign of facilitators who pay attention to the needs of participants. That's rare. Before Simon closed the discussion, he asked us to pause and ask ourselves what we will do on Monday morning as a result of attending these 2 days? After 2 intense days where our minds were busy with questions, thoughts and ideas, this brief moment to reflect was most appreciated. We were given the chance to share with the group what practical action each of us would undertake on Monday morning. Most of the actions revolved around sharing of ideas, and getting others involved in this conversation. I've attended conferences and seminars around the world, and I cannot praise the facilitators enough for their patience, wisdom and guidance these last 2 days. I admired how questions from people watching the webcast and/or following the Twitter stream were captured and relayed to the room throughout the 2 days, which helped me understand what others were thinking despite not being in the same room as us.

Follow up thoughts

Some points which didn't really get discussed much were;

• Resources. Who is going to pay for all of this? Tim Kelsey himself has a few months ago addressed technology entrepreneurs about the £30 bn shortfall in funding that the NHS is predicted to face by 2020. I did hear of some costs in the room today but they were not confirmed. Even though the proposed Citizens' Assembly may have money allocated towards it, is it the optimal allocation of resources? Would the funds that go towards this idea be better spent on keeping a maternity ward open or hiring extra nurses? I am extremely curious to know just how much is already spent annually on patient voice mechanisms such as Healthwatch, NHS Choices and the myriad of others.

• Outcomes, Value & Success. Have we really given a chance to some of the most recent patient voice mechanisms in the NHS? Who has the authority to define that one mechanism delivers more value than the other? For example, how do we define the value of a patient experience survey? I recognise there may be many hard working people involved in those different services. Are we disrespecting their contributions by jumping into a Citizens' Assembly without hearing their point of view? How do we define the success of any mechanism that holds NHS England to account? Is it the absence of a major scandal such as Stafford Hospital or Baby P? I'm curious, what evidence suggests that NHS England can't be held to account right now? 

• Technology. I operate in the world of Digital Health. A world which promises smartphones that know you are sick before you know or sensors that will allow software & algorithms to monitor us remotely without us having to leave our homes, with the smartphone being the healthcare delivery system of the future. A world where doctors' offices & hospitals may reduce in size, because an app on your iPhone knows more about your heart than your cardiologist. Digital Health technology is evolving so rapidly, it's frightening a lot of people, especially those who would prefer the paternalistic model of medicine. With trials of telehealth taking place and the 3millionlives initiative, could the fundamental nature of how we deliver health & social care make a Citizens' Assembly obsolete before it's even been launched?

Now what?

It's human nature to view new ideas through a lens which may be coloured by negative experiences from the past. Many of us despair when we hear of yet another radical idea from government that promises change for the better. I'm not surprised to see some patients on Twitter today expressing sentiments that make them feel like "here we go again, same old story but with different faces, blah blah blah". At the beginning of Day 1, we were told that this is a suggestion, and if at the end of Day 2, the feedback is that we don't need or want a Citizens' Assembly, then that feedback will be delivered to Tim Kelsey and the board of NHS England. However, we were hearing a date today, March 2014, that's a potential launch date for a Citizens' Assembly. To be fair, nothing has been confirmed. It's still very much a suggestion. 

Some people in the audience today felt as if the Citizens' Assembly is a 'pre-ordained deal', and that these 2 days were just a 'box ticking exercise' to make it appear as if stakeholders are involved in the process. I certainly hope not. 

A Citizens' Assembly in one form or another may be what Tim Kelsey and the board of NHS England want. However, despite 2 days of intense discussions, I remain unconvinced that's what the 53 million people served by NHS England actually want (or need).   

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 Society, Involve, and Public_i. A fascinating and thought provoking day with lots of very interesting people. A big thanks to the facilitators Catherine Howe, Anthony 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?

A 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" 

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'?

@ManeeshJuneja @davidjmclare @DavidPrescott logged in within 30 days.

— Oliver Snoddy (@olisnoddy) September 13, 2013

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).

Advert in San Jose Airport, California

Body Computing Conference 2013

So one week ago, I attended the 7th Body Computing Conference at USC, hosted by Dr Leslie Saxon.  I first attended in 2012, and found it extremely refreshing. Why? 

1. Science driven agenda

2. Speakers who have actually built stuff

3. A warm and family like atmosphere 

Maria Binaghi from WIkiLife

This is definitely now one of my top 5 events. I was invited to the pre conference dinner, where one of the speakers was Maria Binaghi from Wikilife. They have come up with  Data Donors, a new platform that connects a number of devices and apps and by sharing your information, you can help them to create an extensive database that can be used by researchers to improve health and eradicate illness. I love the idea, but for me personally, I believe we should be compensated financially in some way for sharing our health data, especially if this platform scales at a global level.  

A civilised affair 

BCC is probably the most civilised event I attend. Why? Lunch gets served to you at your table. Ever been to a super large conference only to grab a boxed lunch, find all the seats are taken, and end up sitting on the floor? One of the other brilliant things is the wireless at USC. Not only is it free, but it covers the entire campus, even if you are not in a building, but just walking down the street!  

Panoramic view of Town & Gown venue

Human shared experiences matter more than devices

BioGram app screen with heart rate added to the picture

One of the first sessions of the day was by Dr Saxon and Charlie Haskins. In an article a few weeks back where  Dr Saxon talked about the future of body computing not being about devices, but about experiences, a new app was mentioned. An app that combines heart rate data with Instagram! This app, BioGram, that is being developed at USC was shown for the 'first time' at BCC.

THE future is about 'context'. For example, knowing WHY my heart rate was elevated at 10.20am. Was it because I was at a conference surprised by a new app or was it because I was stuck in a traffic jam on the freeway at rush hour? Just having a picture associated with the heart rate measurement is a step forward. What other 'contextualised' data could YOU capture to help understand the meaning of the biometric data at that moment in time? 

Pioneers and Visionaries

When I'm at BCC, I'm humbled by the brilliant minds that gather there. One of the highlights of the day was hearing from Andy Thompson, Co-Founder and CEO of Proteus Digital Health who said;

In the 20th century, we've built a sick care system, built to solve problems of that era, which were largely acute. It was also built using signature technologies of that era.

Wain Fishburn, Partner at Cooley made the following point regarding the next 10 years. 

To really do the sensing that's going to allow this ambient influence in healthcare, you've got to get well beyond surface, get into the body, got to be touching the blood. The data will matter, more than ever, but it will require a lot of integration.

I was pleased to see that a good friend of mine, Dr Michelle Longmire delivered a demo of her new system, Medable in a session titled 'Digital doctoring: Diagnosis and treatment through Digital Information'. The video of her demo, and the video of Andy Thompson's talk are below [Note: You may have to turn the volume up very high in order to hear the audio]

Demo by Dr Michelle Longmire

Andy Thompson, CEO of Proteus Digital Health

Dr Dave Albert - A true visionary!

Talking to Dr Dave Albert is always fascinating. At the event, he launched AliveCor's ability to work with Android phones, in addition to iPhones. I'm still amazed by the ability to perform an ECG using my phone! He and Dr Saxon also launched a new 1 year study using the AliveCor heart monitor.

How can sensors really make a difference?

At the end of the event, Esther Dyson remarked on the need for more post-marketing surveillance, in addition to clinical trials. Sensors may provide additional data to regulators and pharmaceutical firms wishing to understand the safety of drugs in the real world. This arena was one in which I worked in at GSK for 9 years.

I had access to the largest patient databases on the planet, yet I often viewed the data from health insurance claims and EHRs as incomplete. The data told me, Who, What, When and Where? It didn't tell us Why? For example, from the data, I might see a 65 year old male patient was diagnosed in the ER with Angina on Wed 30th Jan 2008 and prescribed a drug to control the angina. According to the care pathway, let's say they were supposed to see the cardiologist after a month, but there was no record of such visit in the database. After 6 weeks they had an Adverse Drug Reaction, which was recorded in the database. Why didn't they visit the doctor after 30 days? Could real-time data from sensors help us answer WHY? I certainly hope so.

What else could BCC cover?

The legendary Dr Leslie Saxon!

As much as I enjoyed the event, one aspect of Body Computing was missed out, Privacy, Security & Ownership of the health data. For many innovators, their current business models work on the basis that the person wearing the technology trusts the vendor with security of their data, does not own their own data, and does not necessarily have control over who can access their data. Nothing wrong with that, except that these points should really be discussed at events such as BCC. High tech toilets have already been hacked. With the Internet of Things expected to connect billions of devices, and Google wanting to put implants in us, what are the risks that our bodies and wearable technology could be hacked to gain access to our health data? You may believe that your body's data is useless on the black market. However, what if you are HIV+, have a form of cancer or are diabetes type 1 - are you aware of the risks of those data points one day being publicly available? 

In addition, having given a talk at Health 2.0 Silicon Valley on what's happening outside of America, I believe BCC could be enhanced by having innovators in this arena, from around the world. I'd certainly love to see demos of sensors from Emerging Markets such as India and China. Aren't you curious what sensors exist from a combined population of 2.5 billion?

The future is 'Contextualised' data

We need a lot more 'contextualised' data to truly unlock the value of this body computing technology, otherwise in 10 years time, we run the risk of having lots of historical 'big data' available in healthcare, but offering little or no real value to decision makers. 

[Disclosure: I have no commercial ties to the companies & products mentioned above] 

Day 3 - Health 2.0 Silicon Valley

Yesterday was Day 3, the final day of Health 2.0 Silicon Valley. Another day packed with demos, networking and cutting edge insights.  

The highlights of Day 3 for me were seeing the winner of the XPRIZE Nokia Sensing Challenge announced, the session on Clinical Trials and Research, Health 2.0 International session and the session on the Frontier of Health 2.0.  

Mark Winter, Senior Director, Nokia Sensing XCHALLENGE came on stage and told us more about the competition, including how it was judged. 

The winner, Nanobiosym Health RADAR was also announced at the conference by Mark Winter. It must have been a difficult choice. The video below includes the announcement as well as hearing Anita Goel from the winning team speak about their journey.  

Peter Diamandis, CEO of XPRIZE came on stage, and he believes that in the future, patients will be saying, "Don't let that human touch me, he makes mistakes". The rise of machines, I guess.  

Mark Winter announces the winner of the Nokia Sensing XCHALLENGE live at Health 2.0 Silicon Valley

Front page of Wall Street Journal - Oct 2nd 2013

The session on Tools and Platforms for Clinical Trials and Research was very good. Bill Silberg moderated the session, which included Harris Lygidakis, Roni Zeiger, Anna McColister-Slipp and Joseph Dustin. Demos from the panel members highlighting how their tools could impact clinical trials. Very timely, as yesterday's Wall Street Journal had a headline on how Merck is cutting 20% of it's workforce in the next 2 years. Having worked within GSK R&D until 2012, I've always believed that there are immense opportunities for startups to help pharma deliver the medicines that patients are waiting for. However, many people in pharmaceutical companies are terrified of even using the word 'Disruptive' in the same sentence as 'Innovation'.  

The commercial opportunities in the #pharma industry for #health2con entrepreneurs are huge! Go find a pharma firm today and DISRUPT!

— Maneesh Juneja (@ManeeshJuneja) October 2, 2013

In the afternoon, in the international session, we heard from Poonacha Machaiah at Qyuki talking about The Weightloss Project. What a brilliant idea! People who are overweight and lose weight can help those in the world who are malnourished and don't have enough to eat. 

Poonacha Machaiah from Qyuki talking about The Weightloss Project

James Mathews, Chairman of Health 2.0 India posed the question - how do we bring Health 2.0 to Southern Sudan or to Syrian refugees? I'm glad he was challenging us to think of those around the world who are underserved. I remember a phrase he repeated multiple times, "Use simple tools to do great things". 

Southern Sudan

A Syrian refugee

In Frontier of Health 2.0, moderated by David Ewing Duncan, I loved hearing from Pasquale Fedele who showed us BrainControl, a device that gives people the ability to control assistive technologies with their thoughts using a headset and a tablet.  

Pasquale Fedele, Founder & CEO of Liquidweb talking about BrainControl

Also heard from Louise-Philippe Morency, who shared his work with 'Ellie', a virtual interviewer specialising in facial recognition. Virtual humans in healthcare coming soon!   

Demo of 'Ellie' with Louise-Philippe Morency

Life isn't perfect, and neither are Health 2.0 conferences. Nearly all conferences I go to are packed with sessions, workshops, demos and exhibit halls. It's a challenge to try and fit everything in each day, as well as the all important networking with potential clients and collaborators. It's a personal choice, but if one wants to spend time meeting people at the conference, it can sometimes mean having to skip a session or two. Alternatively, some folks do their networking late into the night over a few beers or glasses of wine. Difficult choices, especially if one is jet lagged. Small things like having the Twitter handles of each speaker listed in the printed program would have made my life a lot easier. The wifi was hit and miss for me, I had problems connecting every day. It wasn't the fault of Health 2.0, I believe there were some attendees grabbing all the bandwidth. Whilst the venue had great facilities, the actual location was sort of like a big business park. Nothing to do or see if you wanted to stretch your legs and have a wander around. By and large, the conference was one of the better managed events I attend. A big thanks to all of the volunteers who were stationed around the convention centre all day and helping us get to the right room at the right time. 

This must have been one of the healthiest conferences I attended. According to my Misfits Shine activity tracker, I walked 2.8 miles during Day 3 of the conference. The layout of the hotel and convention centre meant a lot of walking! Coming from a walking city like London, it didn't bother me, but I could see that amount of walking bothered some American attendees.  

Why have I attended Health 2.0 conferences in the USA, Dubai, Berlin and Delhi? Why did I start the Health 2.0 Chapter in London? There is something unique in the vibe, that Matthew Holt and Indu Subaiya bring to each conference. Especially as they are far more down to earth and friendly than a lot of conference organisers I've met. That translates into an enjoyable experience for attendees! At other Health tech events, I've found sometimes, other attendees won't speak with you unless you are from a well known corporation or Venture Capital firm. 

I personally prefer the Health 2.0 Europe conference to the one in California. Why? Smaller group and I like smaller groups. As conferences become more popular they grow, it's inevitable. I prefer the 'intimacy' of conversations in a smaller group. When I run my Chapter meetings in London, I limit each event to 40 attendees, which means we aren't overwhelmed by having to meet 150 people during an evening. For me, it's about bringing diverse groups of people together and building a community that makes amazing stuff happen. 

Health 2.0 Europe was in Berlin last year, but this year, it's in my city, London. I'm grateful to have been given the chance to run a pre-conference workshop on Nov 17th on 'Health 2.0 Tools for the Elderly'. The increase in the aging population, and the burden on society as a result is one of the biggest crises in Global Health, the world faces in the next 50 years, and I sincerely believe we need to act NOW! If you are interested in demoing at my workshop and/or want to discounted entry into the entire conference, please get in touch. I'll do my best to help you. 

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

Day 2 - Health 2.0 Silicon Valley

The lure of events in Silicon Valley

The amazing David Ewing Duncan

One of the reasons I love coming to Silicon Valley for events is just how progressive and laid back people are. They are very much focused on business like other parts of the world but Health 2.0 conferences are always informal and friendly. It's one of the few events where I can walk around wearing a Hawaii shirt and potential clients are not expecting you to be wearing a shirt and tie! I remember meeting a CEO of a tech company in a coffee shop in Silicon Valley last year so he could demo his software. Despite being very successful, he attended the meeting wearing a t-shirt, shorts and sandals. It's a small point, but again, it's very different from the traditional attitudes found on the East Coast of the USA and in Europe where where your parent's occupations and where you went to college can often dictate what opportunities come your way. 

Xprize Nokia Sensing Challenge

I'm passionate about the potential of sensors, and meeting the teams from Xprize's Nokia sensing challenge alone was worth flying 6,000 miles for. Many observers are critical that Health Technology is largely developed by the 'worried well' for the 'worried well'. There is an element of truth in that. However, meeting the teams from around the world, it became clear very quickly that each team had designed their solution with the mindset of wanting to impact the health of 7 billion people. For those that haven't heard of the challenge, this infographic does a good job of explaining why the competition was set up. 

Let's meet the teams

First of all I met Silicon BioDevices, who have developed handheld, disposable device that takes measurements from a drop of blod and instantly transfers the results to a mobile phone. And it costs $1 to make!   

Next I met Apollo, who have developed a nano spectrometer-on-a-chip. This tiny chip offers the same functionality as a $10,000 machine and can be embedded into wearable technology.   

Wandered over to i-calQ, who have developed technology that turns your smartphone into a portable laboratory and medical specialist. In addition, they developed a decision support system that interprets the results and then suggests how much medicine should be given to treat the patient.  

InSilixa have developed a CMOS chip specifically for biosensing. Nobody else does that!  

ABUS-urodynamics have developed a wearable device that measures urinary flow, anywhere, anytime in an easy and natural manner. Currently patients have to use toilet-borne equipment in hospitals to do this test. Fascinating stuff!  

Onto Quasar, who have developed a chair pad with embedded sensors that work through clothes to monitor the heart's activity, known as an ECG. Think of the applications for older people. Now, that's the unobtrusive monitoring that I want to see more of in the future.  

The programmable-Bio-Nano-Chip  technology offers the ability to determine if a patient has had a heart attack, whilst they are waiting in the Emergecy Room of the hospital!  

Unfortunately, the battery on my phone died before I managed to meet all of the teams. The other teams are: 

Elfi-Tech - a sensor that can detect blood flow waveform. The sensor could even be incorporated into a watch!

Holomic - Handheld, Quantitative, Point-of-Care, Rapid Diagnostic Test Reader

Mobosens - a smartphone based sensor, provides accurate nitrate concentration measurements. Allows citizens to collect and share environmental data.

Nanobiosym Health RADAR - One drop of blood or saliva can be used to detect presence (or absence) of a disease's pathogen in real-time with gold standard accuracy.  

Owlstone - microchip spectrometer can be applied to smelling breath of bodily fluids for chemical markers of disease long before actual symptoms appear 

Winners to be announced today

I'm so inspired by the genuine innovation from each of the 12 teams. When we registered at the conference on Monday, we were each given a plastic tag to vote for our favourite team. At 9.45am Pacific Time on Wed Oct 2nd, at Health 2.0 Silicon Valley, one Grand Prize Winner and five Distinguished Award Winners will be honored by XPRIZE with cash prizes of more than $1 million. I wonder which team will win the Grand Prize! 

The future of sensors

My week is turning into a sensor fest, as after Health 2.0 Silicon Valley finishes, I'm off to Los Angeles to attend Body Computing 2013. Quoting from their website, "We pride ourselves on straight-forward and thought-provoking discussions (not marketing hype)", I attended last year, and the absence of hype was noticeable, which is refreshing. Another event worth flying 6,000 miles to attend.  

Innovation in sensor technology i something I deeply admire, but when I think of life back in England and around the world, one question springs to mind. Who is going to pay for all of this innovation in sensor technology? After all, many countries, especially the USA and those with aging populations very much want (and need) to reduce spend on healthcare. After all, money doesn't grow on trees. 

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

Day 1 - Health 2.0 Silicon Valley

Health 2.0: A global perspective

After the talk, we had a lively Q&A session

So the actual conference didn't begin until 2pm on Monday 30th September 2013, but I was giving a pre-conference workshop, Health 2.0: A global perspective at 8am on Monday morning! 

Those that know me, are always hearing me ask why we can't do more in Digital Health for as many of the 7 billion people than inhabit the Earth. Many conferences in Silicon Valley are very focused on innovation in Silicon Valley, let alone New York, or a foreign country. I'm grateful that Health 2.0, who gave me this chance to speak, consider the global picture. You can read more about my motivation for giving the talk in my Health 2.0 blog post from a few weeks back.  

The talk was well received, and you can see the slides below. It was extremely challenging to condense the efforts of 6.7 billion people into a 60 minute talk, but I gave it my best shot!

I asked the audience after my talk a question. I said, "If I was a startup outside of the USA, and I approached you with a new product/service, would you be more or less willing to listen to me, having heard this talk?". It was marvellous to hear people in the audience saying "more willing". That's encouraging, because it demonstrates that people in America ARE open to learning about what's happening abroad. I chose in my talk to move beyond the hype of Emerging Markets, and give practical examples of how doing business in Emerging Markets can be extremely risky. 

I included aging population as one of the challenges facing the world. Timely, as a new global study published today says that the world is NOT ready for aging populations. 

"Global study: World not ready for #aging population" http://t.co/69e8gMiGAw #digitalhealth #health2con

— Maneesh Juneja (@ManeeshJuneja) October 1, 2013

Health 2.0: A Global Perspective from Maneesh Juneja

At 2pm, Matthew Holt and Indu Subaiya opened the conference. 1,700 attendees. There is definitely a lot of energy at this year's conference. I believe it's partly due to the launch of the new online health insurance exchanges launching on Tue 1st October. 

Panoramic picture of the attendees in the Missing City Ballroom 

There was a keynote from Gavin Newsom, Lt. Governor of California. Definitely seemed to be a very forward thinking and progressive politician. One of the points he made stood out, "Let's move from machine thinking to platform thinking. That's what Health 2.0 is all about." 

Tim Kelsey, National Director for Patients and Information in the NHS, from England spoke about plans for spreading innovation in the NHS to make it the best healthcare service in the world. Watch the 5 minute video below to hear more.

One demo that stood out was from Christopher Bradley, who founded Mana Health. They just got awarded the contract to build the patient portal for the state of New York. I love the way they have the sliders that allow you to change who can see your data.  I took a short video of the demo.  

There is a lot of walking involved in this conference, due to the size of the convention centre. It's actually quite a good thing being a health conference. I'm going to track the number of steps I walk today and see just how active the conference has made me!  

Great to meet old and new friends today. In the evening reception, I caught up with Eugene Borukhovich, who runs the Health 2.0 Amsterdam Chapter. Definitely a guy worth speaking to if you spot him.  

Want to replicate the culture of Silicon Valley?  

Many countries are trying to build their own startup ecosystems, looking to beat the Valley. To those policy makers with grand ambitions of one day eclipsing Silicon Valley as a hotbed of innovation, you have to inspire people everywhere, not just in offices of tech companies. When I checked into to my hotel for the conference, I noticed a board that tells you the weather for the next few days. In addition, the board also had a quote by Peter Drucker. That tells me so much about the underlying mindset out here, and helps to explain why you meet so many people wanting to change the world (who often end up doing so). In order to understand the very roots of Silicon Valley, I found this PBS video. It's 90 minutes long, but it's extremely useful for anyone outside of Silicon Valley. It really connected the dots for me.  

Health 2.0 Europe: We know how to innovate too! 

As Health 2.0 London Chapter Leader, the ecosystem of nearly 500 members I have created is due in part to what I have learnt from attending Health 2.0 conferences, not just in the US, but in Berlin, Dubai, and Delhi. The Health 2.0 Europe conference is moving from Berlin to London. I'm really excited about it being held in my city. 

If you're at Health 2.0 Silicon Valley this week, and haven't thought about attending the conference in London, I want to let you know that there is so much going on in Europe. Partly, the aging populations combined with deep austerity cuts to budgets has led to governments wanting to support entrepreneurs in health technology. Those people willing to take risks and try new ideas, are quite possibly, the very people who may help Europe meet the challenges of the decade ahead.  

If you would like to learn more about the London chapter and/or the Europe conference, please come and find me. I'm here at the conference until Wednesday evening.  

Social Media: Can it really make a difference?

Yesterday, I was part of a panel at Social Media Week London. Hosted by Mairi Johnson of Healthbox Europe, the title of the panel was Digital Healthcare: Pulse Found

 I was joined by a diverse group of practitioners in the space, Jemima Stewart, Manuela Maiguashca, Tim Anstiss, Jorge Armanet and James Norris. 

Data from social media: Where is the value?

Given my data background, I made a few comments. Companies have developed 'social listening' platforms, and often the premise is an organisation such as a pharma company can understand what's being said by patients in real-time about their medicine, particularly relating to potential issues with the medicine, such as adverse events. However, when I speak with pharma, they tell me, knowing 'problems' from social media isn't enough, they want the other side of the coin. What benefits are patients experiencing from the medicine? Now, is social media giving you the full picture, or are you hearing more about the risks, and less about the benefits? 

Whilst finding out what patients are saying on social media could potentially be useful, the true value will only be realised when it's linked to the patient's medical history. A marriage of 'hard' and 'soft' data in healthcare. Finding the signal among the noise. 

Trust and Engagement

Part of the discussion was also about engagement and trust. I recall my own example, I had an issue with a rental car a few months ago. I tweeted about the issue to the car rental company. To my surprise, they followed me within minutes on Twitter, and sent me a direct message asking for my phone number. I did that, and spent 30 minutes with a member of their customer service team, who LISTENED to my issue, and did his best to resolve it there and then. It turns out he and his colleagues spend all day monitoring what is said about their rental car company on social media, and they respond accordingly.  

Now, look at healthcare, imagine you're a HIV or mental health patient, and you receive less than optimal care. Would you really post a tweet to the NHS with details of the problem? Online communities where conversations can be shared privately may provide a way of capturing that information, but even then, how can a patient really be sure their personal data is secure? Healthcare providers work hard to protect privacy of both the patient and the healthcare professional, which allows trust to be a cornerstone of the relationship. As more doctors and patients get social media accounts, what are the risks that this hard earned trust can be broken? All it takes is one public tweet to damage someone's reputation. 

I remember the unforunate events with the Boston bombing earlier this year. Concerned citizens took to social media, utilising Twitter and Reddit to try to help the police find the suspects. One night, citizens believed they identified a suspect, a student who had vanished a few weeks back, and shared this on social media. For a brief period of time, the misinformation that spread so rapidly on social media branded this student as one of the bombers. Reddit had to apologise to the family of the student for what happened.  Naturally, I can understand the caution that many in the healthcare profession have towards embracing social media.  

I also just read today about an airline in the UK, which allegedly tried to prevent a passenger boarding their plane, because he publicly tweeted something negative about their customer service. Now, imagine in healthcare, you express your dissatisfaction using social media about your experience in healthcare? Could it potentially impact who wants to treat you?  

Pulse of the patients: A true representation? 

Many will argue that social media allows us to understand the 'pulse' of patients in real-time. Yes, that's true to some extent. However, what about the 7 million people (15%) in the UK that have never used the internet? Many of which are poor, disabled or elderly.  

The biggest users of healthcare, are typically not the 20 somethings running around creating apps in East London or Palo Alto. They are the elderly. The biggest challenge the NHS faces is chronic disease management. Who are living with multiple comorbidities and taking multiple medications every day? Again, older patients. How many of them are online? How many of them can afford an iPhone with a data plan? How many of them WANT to share via social media, given that did not grow up in the digital economy? 

80% of UK care homes have no access to the internet. Does social media capture what the residents of these care homes are saying about their care? Nope. The National Audit Office has warned the UK government that it's fixation with digital by default agenda could leave people behind. Will this trend mean that the 'Digital Divide' becomes a 'Digital Gulf'? 

Evidence

I believe we need to generate evidence of what works and what doesn't work in social media, so we have the chance to make informed choices. I've observed far too many decision makers adopting new technologies simply because it's this year's buzzword. Every organisation, large or small has a finite budget. Maybe in your organisation, the money you would spend on setting up a social media department might be better spent on hiring two extra nurses?

A recent study at UCLA, recruited 112 men from Los Angeles who have sex with other men, and examined if social media and online communities could increase HIV testing and lead to behaviour change. The results seemed to suggest so. However, the two biggest groups in the study population were 60% African-American and 28% Latino. I'm curious. If that study were replicated in rural North Carolina or rural Yorkshire, would the results be the same? 

Looking ahead

In life, one of the methods for obtaining and retaining power is to not share information with others. Social media promotes sharing, collaboration and transparency. That's bound to make those in healthcare who currently wield power quite nervous. 

Overall, it was a fascinating discussion, with a series of excellent questions. We ran out of time, but the questions being posed by the audience made me feel like we need to have a healthy, sincere and open debate about the role of social media in both healthcare AND social care.  

Are we moving towards a world where one day every doctor, every hospital, every patient will have a social media presence? Will we no longer need people to work in customer service departments, because patient feedback is received and acted on in real-time using social networks? Will the openness and transparency promised by social media prevail over those who would rather keep information locked away in a filing cabinet?