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Policy Participation Case Study: NHSCitizen
NHS Citizen aims to create a more accountable and participatory healthcare system in England by integrating diverse patient voices into decision-making processes. The initiative focuses on connecting existing forums, fostering an open culture, and enabling contributions from various communities, while navigating challenges related to community engagement and balancing different perspectives. As it progresses towards its first official citizen assembly, the project emphasizes the importance of creating a shared space that encourages productive dialogue rather than just a forum for complaints.
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Policy Participation Case Study: NHSCitizen
- 1. NHS Citizen -trying to build a network of networks Michelle Brook – The Democratic Society
- 2. Where we start •NHS is England's healthcare service funded entirely by Government (Scotland, Wales and Northern Ireland have separate systems) • Probably England's most popular public service and very politically sensitive. • Big infrastructure of patient participation groups, pressure groups and others - a large existing conversation
- 3. Why NHS Citizen? •New NHS England Board (from 2012) wanted to make itself more accountable and to and listen to different sorts of evidence • Sense that patient participation was dominated by similar voices and not joined up. • Focus on complain-and-suggest rather than bringing people into the decision making process or seeing them as co- producers of their own healthcare • Need for more open culture within NHS management
- 4. Design principles • Don'treplicate - there are many existing forums and discussions, we should bring those conversation in rather than stealing their traffic • Accessible to all - make sure that people are able to contribute in any way they feel comfortable, don't impose a debate model • Be agile - test and change in response to feedback • Clear connection to influence - make sure NHS senior management are involved and that every issue that gets a certain level of support gets an answer
- 5. Design community • Designevents roughly every six weeks over the course of a year • Design changed as a result - more networked, less focused around linear debate and more around connecting existing conversations elsewhere, more focus on building a single online and offline conversation • About 1,000 people involved, with a central core group who came to most events • Design was published as 1.0 in April 2015. Building first version started in June.
- 6. Making it real •Build had to start quickly, so current version is very early stage - and some part of the design were more ambitious than we realised • Compromises we have made (for example, starting with a single discussion space) have validated the original multi-channel design • Heading towards first official Citizen Assembly in November - currently preparing the issue list from public participant input • True mark of success will be changing the culture in NHS
- 7. “Gather” community • Notjust a single community – we’ve engaged with multiple online and offline communities, bringing ideas from offline into online discussions and vice versa • Still two separate streams but starting to see some crossover – facilitators often acting as a connecting point. • Some very strong personal testimony – equally some challenging behaviour.
- 8. Our challenges • Canyou have a long-running deliberative space or does an insider/outsider split inevitably develop? • Is a truly joint online/offline community possible? • Balancing the need to be heard and to voice frustrations, with opportunity for productive conversation • How can we make NHS Citizen a shared space rather than a vehicle for complaints or a PR exercise
Editor's Notes
- #2 My name is Michelle Brook and I work for The Democratic Society, one of the organisations who is working on the NHS Citizen project.
- #3 Point 1 – NHS is England's healthcare service funded entirely by Government (Scotland, Wales and Northern Ireland have separate systems) Point 2 – Probably Englands most popular public service – and indeed referred to only semi-jokingly as being the closest thing England has to a national religion. And it is very politically sensitive. Anything that looks like outsourcing is often met with concerns about privatization, while others are very much more willing to get more private sector involvement in service provision saying that greater efficiency is needed. Either way, there are concerns from both some front line staff and the public that changes occurring within the NHS is driven by political ideological reasons, and being done to people – rather than with them. Point 3 – And there is an existing large conversation about healthcare in England. There are patient participation groups – linked with doctors surgeries, patient involvement groups linked to charities, as well as other pressure groups from across the ideological spectrum trying to push their specific beliefs.
- #4 Point 1 – The New NHS England Board form 2012 wanted to make itself more accountable, to listen to different sorts of evidence, and to hear more effectively from those using the NHS. Point 2 There was a sense that patient participation was dominated by similar voices – often these are retired, middle class, white men with a chronic illness. Now there is nothing wrong with retired, middle class white men, but these aren’t the only users of the NHS. And in many cases it often seemed to be not just the same types of people, but the the same individuals who pop up in a variety of these groups and boards. While they do have very valuable insight, with the best will in the world, their experiences cannot always translate to the experiences of all other patients and their families. Further more – with all these different groups, the opportunities for patients and individuals are often joined up – making it confusing both for patients and for those NHS staff who are trying to hear. Point 3 – And then there is the fact that many of the existing structures are based upon a model where patients criticise and critique existing services and then suggest changes – rather than including people in the decision making process. Patients aren’t being involved in early stages of framing issues and, helping to shift the priorities of the NHS. Point 4 – and finally - NHS Citizen is not just about setting up a process to enable people to be heard. As with most organisations of its type, there are cultural changes that need to take place within the NHS to allow them to hear form people more effectively. And one of the aims of NHS Citizen is very much to help with this.
- #5 And so the design of the project began in 2014. And the team were running with a couple of key principles.
- #7 Point 1 – Build had to start quickly for various reasons. So the current version is very early stage, and some parts of the design were more ambitious than people perhaps originally realised. So what we’re currently exploring is a model which contains a number of compromises from the original design. For instance, despite originally wanting to develop something that is multichannel bringing in the conversations from multiple places, we’re currently using a single online discussion space – with deliberation taking place within a small, self-selecting community. And the compromises we’ve made such as this have actually validated the original design. And we’re already looking at how we can take the lessons we’ve learned and improve things in the future So we’re heading towards our first official Citizen Assembly in November – There was a pilot last year, but this is the first official one. - and in these events we bring together members of the board of NHS England with citizens who’ve raised issues. Were currently preparing the issue list from public participant imput from the last few months. And our true meuasre of success isn’t ‘we discussed 10 issues that are important to citizens. Although that’s obviously a very high priority. Instead our measure of success is changing the culture within the NHS itself. Some may consider this just a small goal.
- #8 Point 1 –We’re trying not just to create a single online community. Not only have we been using the existing discussion space and running deliberation in that space, we’ve been engaging with multiple online and offline communities – for instance running twitter chats and tapping into existing discussions and groups in online spaces. We’ve also been talking to existing offline communities – including those who rarely use online spaces such as gypsy and traveller communities and those in rural communities (far more likely to be digitally excluded). And we’ve been bringing ideas from the offline discussions into the online space and vice versa. Point 2 – We were currently are the online and offline groups are still very separate but we are starting to see some cross over – people we’ve spoken to offline joining us online, and our online facilitators and people running events are often acting as that middway connecting point to help communicate between the two different worlds. Point 3 – we do have some very strong personal stories – people who are feeling empowered by this whole process. People who are excited at the opportunity to have their voice heard and to share their experiences. Equally we’re seeing some very challenging behaviours – people who for various reasons express themselves in ways that aren’t easy for the facilitators to engage with. Some of this is anger about the NHS and political situations, others are upset about not being heard in prevoius engagement exercises, And, as we’re dealing with health, it is also possible that indivudals may have health problems that mean they don’t always epxress themselves in ways that are easy to hear.
- #9 Our challenges – and these are ongoing concerns, considerations and things we’re working on. Point 1 –One of the first questions we’re trying to solve is can you have a long-running deliberative space or does an insider/outside split always develop? As NHS Citizen develops there will always be some aspect of deliberation and discussion around what gets brought forwards by individuals – and it is very hard to create a space that is welcoming and accessible to newcommers, from a wide background right across England. If you get too much of an insider clique forming then you risk an agenda being pushed by a few individuals, rather than being truly deliberative. Point 2 – linked to the above point – if you’re using an online space for deliberation, what does that mean in terms of developing a truly joint online/offline community? You’re clearly biasing one group of citizens above others. So how do we connect those dots more throughly? And how can we make sure that those who are engaging offline feel somewhere near the same sense of ownership of the programme as those who are engaging online. Point 3 –A third challenge is balancing the need to be heard and for citizens to voice frustrations, with creating opportunity for productive conversation. Having been leading the facilitation and moderation team, and being at the front line, for the last few months – I can tell you this isn’t easy at all. As I said before – a l lot of the people who volunteer to get involved in these conversations are often those with a reason for being there – they are angry about something or they have been hurt by something. And some of the frustrations voices are incredibly useful – once you get past the initial urge to shut down and not deal with a problem. They frce us to challenge and question how we’re delivering the project, make us work harder to be better, more transparent, more communicative. But sometimes the frustrations voices dominate and take away from more productive conversation. Either by dominating the time we have, or by acting in such a way tha tputs puts off those who perhaps feel more vulnerable from engaging.who the chose not to engage. Point 4 – It’s always going to be difficult trying to bring about culture change. And so we really need to work with the NHS staff to help them find the means by which they feel comfortable engaging in the online conversations in an authentic fashion. And this links to the above point about how we can create opportunity for more productive conversations (because there have been many productive conversations already), but supporting NHS staff to feel more able to engage with challenging views without closing down conversation – something as a moderator I very much understand the urge to do - can be difficult. But for NHS Citizen to drive the culture change within the NHS that we want to do, we very much need to be working ever more to enable this.