ARC NWC Joint Public Adviser/PhD Student Journal Club September 26 2022

By Elisa Jones and Robert MacDonald

It was September 26th and a small group of public advisors and students met up on zoom for the second NIHR ARC NW Journal Club (JC). The Patient and Public Involvement and engagement (PPIE) related paper that we – Robert MacDonald (public advisor) and Elisa Jones (PhD student) – had chosen was: ‘The Snakes and ladders of user involvement: Moving beyond Arnstein’ by Jonathan Quetzal Tritter and Alison McCallum (2006), from the journal health policy. See https://www.sciencedirect.com/science/article/abs/pii/S0168851005001314

Why this paper?
Both Robert and myself had read about Arnstein’s ladder and come across it in different places. Robert in his work in architecture, design and art and myself as a research assistant supporting researchers to carry out PPIE in a previous job. We had found that the ladder often pops up in PPIE talks and sometimes in guidelines, but you don’t often hear much critique of it. In their paper, Tritter and McCallum (T & M) bring up a number of interesting ideas: what they think are the missing rungs on the ladder; a discussion on ‘lay expertise’; the different justifications for carrying out participation and what they call the dangerous snakes that might lurk in involvement activities. We thought this paper might be good for a discussion as the public advisors at NIHR ARC NW and PhD students would have a range of different experiences of ‘participation’ which could be drawn upon when we discussed the paper.

What it the paper all about?
This paper takes a closer and critical look at Sherry Arnstein’s ladder of citizen participation. The ladder was devised in 1969 and according to Arnstein was meant to be provocative. It takes a look at the different types of ‘participation/non-participation’ that Arnstein had come across in her work in urban planning/development. There are 8 rungs on her ladder, which are divided up based on the amount of power that citizens are allowed. It runs from Manipulation (at the bottom) right the way through to Citizen Control at the top (You can read more about the ladder here – https://www.thinklocalactpersonal.org.uk/Latest/Co-production-The-ladder-of-co-production/ )

T & M take the ladder of participation and bring it to the context of user involvement in health. They provide lots of background information and history to this kind of involvement, before going on to describe some of the problems they’ve spotted with the ladder. Many found the paper a bit tough and long, with lots of complicated words and jargon in it.

Some key things from the paper that popped out to us:
Missing rungs on the ladder
– Different patients or public will require different methods (e.g. some people may not have the time to be a patient partner in a project, but might be happy to have a one-off chat with a researcher)
– If power is transferred then the workload and responsibility for the project would also need to be transferred, the paper asks is this realistic?
– T & M also discuss the tension of involving some people intensively and involving many people in a limited way.
– They write that Arnsteins ladder is too simple, that it implies that PPI should be aiming for ‘citizen control’.
The dangerous snakes of involvement
If citizens get control over the health care system, this could lead to what T & M call ‘the tyranny of the majority’. This Citizen control will lead to service provision that meets the needs of some groups more than others. It could start a new class of ‘user’ elite (E.g. Only those users who have the time, skills and motivation to be involved will be able to).

Here are the questions we discussed during the meeting:
1. Had you come across Arnstein’s ladder before? Do you have any views or thoughts on the ladder? Do you have any views or thoughts on Tritter and McCallums ‘new approach’? (e.g. the mosaic)
2. Have you been involved in different projects in different ways, where do you think they would sit on Arnstein’s ladder?
3. Have you thought about ‘power’ before in your PPI work and who has ‘power’? Is this important to think about? Does transferring power to public/patients lead to better involvement? (e.g. is co-production better than consultation?)
4. What justifications are there for PPI? What do you think of the justifications offered by Tritter and McCallum? (e.g. accountability; funding; consumers)
5. Have you come across any ‘dangerous snakes’ in PPI? Are the dangerous snakes that Tritter and McCallum discuss ones that you have seen or think could happen if citizens have shared control?
6. Are there any differences between ‘lay expertise’ and ‘professional expertise’? Do you have any views or thoughts on this? Can a public contributor be ‘too expert’ or become ‘too expert’ over time?

Reading and discussing this paper provided an opportunity for us all to reflect on our own motivations for carrying out PPIE. Some public advisors voiced that they did not want to reach the top of the ladder of having ‘citizen control’, that aiming for collaboration was what was important to them. One advisor stated they felt it was about having a collective aim or understanding about where you are going and that everyone plays their own part in achieving that.
Some expressed feeling that they were are on a moving machine of carrying out lots of involvement everywhere and it was hard to stop and take time to think. Is it important to build in more reflection time into our PPIE practice?
The paper inspired us all to take a step back and consider not only the usual question of ‘Is our involvement working? But perhaps more importantly: What are we even trying to do when we carry out involvement?

Selina Wallis, Public Involvement Manager at ARC NWC said: Having the time and space to discuss research and involvement/coproduction with PhD students who are starting out in their research careers and public advisors is a wonderful opportunity to get beyond research abstracts and get into the detail of how research is planned, enacted and disseminated. Hearing differing voices, respectful disagreement and combining lived experience from both sides is both challenging and fun. Journal clubs have been used across many settings to improve critical appraisal and build leadership and presentation skills but in a setting with differing stakeholders, have been found to generate culture change and build relationships, its that that we are hoping to achieve here, especially as we move into the final years of the ARC where we hope to co create ideas on how we can reshape the dominant narratives around research creation with collaboration and coproduction as a focus.

There was interest on twitter about the club with tweets reaching over 1250 people. @unlockingbirth @arcnwc

See:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9278475/
https://onlinelibrary.wiley.com/doi/full/10.1002/jmrs.569

The next journal club in Nov/Dec will be announced soon. Contact the PPI team for info
selinaw@liverpool.ac.uk

Suggestions for further reading from the group:
From Bernard – Collins, K., & Ison, R. (2009). Jumping off Arnstein’s ladder: social learning as a new policy paradigm for climate change adaptation. Environmental policy and governance, 19(6), 358-373. https://onlinelibrary.wiley.com/doi/10.1002/eet.523
Robert – Freedom to Build (1973) Dwelling Control of the Housing Process, John FC Turner.
Housing as Verb. The Rebirth of Liverpool (2008) Jack McBane, Major Community Housing Cooperative involving housing and urban regeneration. (see also https://www.ingentaconnect.com/content/alex/benv/2015/00000041/00000003/art00008
Alternative Third Wave Housing Futures “, Robert MacDonald, revisiting the cooperative housing experience, Liverpool University, AMPS Conference( 2004) HLP

Publications.
Patient Participation in Health Care , Healthwatch, Patient Participation Group: Best Practice Guide (2017). https://healthwatchcwl.co.uk/wp/wp-content/uploads/2018/03/PPG-Best-Practice-Guide-2017.pdf

Authors bio;
Dr Robert G MacDonald Public Advisor ARC NWC is an architect and researcher in Medical Architecture with a special interest in Mental Health and Well Being. He has published extensively about “Design for Dementia” and is a MerseyCare tutor Art for Well Being Tutor.

I’m Elisa a third year PhD student. My project is looking at Citizen involvement in data initiatives. It is funded by a studentship from the Institute of Population Health, University of Liverpool. I’m carrying out ethnographically-informed qualitative case studies. Case study sites include: a citizen jury that asked jurors to consider real-world data initiatives; and a public panel set up by a databank. Before starting the project I worked as part of a small PPIE team at a NIHR Biomedical Research Centre.