In September 2014 NHS Citizen – a national programme giving the public a say on healthcare matters within NHS England – ran a full-scale test assembly which consisted of around 200 patients, carers, activists, volunteers, third sector and public services workers who came together to discuss agenda items chosen by citizens.
They met with the NHS England Board in an informal and deliberative setting where they could discuss the agenda items freely and openly. Unlike other assemblies, the participants were neither randomly selected nor representative of the broader population but had volunteered with most having had a history of active participation in the health system, whether as employees or as patients and carers.
The assembly was split into five ‘issue groups' which had been selected from over 80 potential issues submitted in advance through an online process. These issues were: access to services; mental health; young people and healthcare; gender identity; and self-care and personalisation. Assembly members joined different groups based on their own experiences, knowledge and interests.
Assembly information packs were created for each of the issue areas and given to every participant before the event, to be used alongside the knowledge and experience of the healthcare system they already had.
After the detailed work in the issue groups had concluded, all the participants as well as NHS England Board members reconvened for the final plenary in which two representatives of each issue group highlighted the key points from their discussion and shared their insights. There was then a response from a Board member to each group, and four participants volunteered to respond to the Board members' comments to make sure they were accurate of the discussion.
The organisers found that the conversations were rich and constructive but more time was needed to cover the broad scope of issues and to form clear solutions. Half a day was not enough time to deal with the complexity of the issues raised, and as a result the event finished with reflections of the Board, rather than commitments to tangible result. Nevertheless, NHS England was optimistic that the assembly would be the beginning of a continuous and transparent process with the NHS genuinely involving patients in the co-design and co-production of healthcare, with a clearer idea of how to do this effectively.
Lessons learned:
- Information packs can be created beforehand to brief assembly participants on the issues at hand before they engage in deliberation – for example, background to devolution and the potential aspects of a devolution deal.
- Enough time must be provided for the issues to be deliberated on sufficiently – often two weekends amounting to four days of exploration, discussion and development of recommendations.
- It is better to finish with concrete commitments from leadership to take on recommendations, and clear explanations of why some recommendations are not being implemented if they are not. In the case of assemblies on devolution, this process may be helped by the involvement of councillors and mayors in providing evidence and supporting deliberation.