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

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]

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

Some of the existing patient voice mechanisms

More 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.  

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

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).   

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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" 

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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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