Co-production: the PATCHATT partnership approach
We wish to work in partnership with individuals and organisations to achieve our aims. The following, multiple-authored account of our learning from a collaborative approach to developing PATCHATT support group sessions illustrates our commitment to co-production in action.
Simple practices to support effective co-production: lessons learned from the work of the PATCHATT development group
Amanda Roberts, Barny Hole, Claire Dickerson, Shirley Gibson, Valerie Hill, Asako Saji, Andrew Seabrook and Caroline Seabrook May 2022
A recent blog in the BMJ highlighted the multiple challenges of putting the theory of researcher and non-researcher co-production into practice (Sinath Reddy et al., 2021). Co-production describes the sharing of power between professionals and citizens to allow them to design, plan and deliver interventions together. It recognises the diverse strengths of individuals and values them equally (New Economics Foundation, 2014).
We are a group of patients, carers, clinicians, researchers and volunteers who have co-developed the PATCHATT (Patients Changing Things Together) initiative. In PATCHATT, adults with a life-limiting illness support one another to lead a change which matters to them. We used the National Institute for Health Research (NIHR) co-production principles (2021) to develop some simple practices which helped us to address co-production challenges. We share these here.
NIHR principle: Reciprocity
Our practice - Acknowledging each individual’s agenda
We opened our first development group meeting with the question “what do you hope to gain from your involvement in this group?”. Responses gave us the opportunity to learn more about each other as individuals whilst also surfacing and validating the multiple agendas of the group. Discussion cemented our individual membership of the development group and allowed us to feed off the commitment of others, strengthening our own.
NIHR principle: Sharing of power
Our first practice - Agreeing ways of working together
We discussed how we were going to ensure that each group member had time to speak and felt both listened to and respected, key co-production principles (New Economics Foundation, 2014). We recorded the decisions arising from this discussion in a Working Together document.
Some group members saw this document as a useful boundary-setter. Others supported Gilson et al.(2021) in viewing the mutual respect formed during our discussions as a more reliable force for fair working. We all believe setting explicit, co-developed boundaries allowed us to contribute freely, while respecting the views of others and the needs of the project as a whole.
Our second practice - Clarifying the scope of influence
We clarified the influence we could all have on the PATCHATT programme. We made an overt statement that, although Amanda initially introduced the idea of patient-led change, the group had the freedom to shape the initiative. Through discussion, we challenged ourselves to be explicit about the initiative’s remit and feasibility. Attempts to flatten hierarchies can sometimes lead to the continuing dominance of experts by position (Occlu and Matthews, 2016) or to patient views being falsely prioritized (Johannesen, 2018). Either of these situations can obstruct a project’s success. A regular reminder of our agreed ways of working helped us avoid such pitfalls.
Issues raised by any group member were discussed openly. We tried to reach decisions through finding an agreement everyone could subscribe to. Where this was not possible, the meeting chair had the final say. Following David Gilbert’s advice (2020), we had grown up conversations about what decisions were taken and why, conversations which were eased by our pre-established protocols.
NIHR principle: Building and maintaining of relationships
Our practice - Being authentic
Authenticity in this context refers to more than being true to oneself. Here we use it to mean a process of becoming aware of the uniqueness of our lives and our capacity to both act and take responsibility for those actions (Kreber, 2013). Group members do not ‘represent key constituencies’ but instead bring our unique experience of life and death. It is through this lens that we shaped a change-leadership programme for others.
We agreed the statement ‘nothing you say is stupid’ as a proxy for this way of thinking and working. For some, this phrase helped dispel the imposter syndrome. For others, it allowed a questioning and revision of thinking. For all, the focus on authenticity allowed the sharing of alternative ways of seeing which strengthened our co-production work.
NIHR principle: Respecting and valuing the knowledge of all
Our practice – Learning through sharing
The endemic nature of inequality makes inclusive practice a challenge. Some group members are used to speaking in public, others are not; some have the status the titles of ‘doctor’ or ‘researcher’ bring, others do not; some are confident of their views, others are not; some are comfortable thinking on the spot, others are not.
We wished to lessen these inequalities through a commitment to learning through sharing. We took meeting notes, rather than minutes, so that everyone's contribution could be acknowledged and the route to decisions was clear. We encouraged individuals to avoid acronyms and explain words not in common usage. The Chair ensured that everyone who wished to had the chance to speak if they were able to do so. The resultant horizontal hierarchy ensured the PATCHATT initiative is now imbued with diverse thoughts and perspectives.
NIHR principle: Including all perspectives and skills
Our practice - Valuing difference
Learning takes place most effectively where difference is valued. We discussed the need to see critique not as an attack, but as a building block. We interpreted a lack of understanding not as a deficit but as evidence of a different kind of knowing. This approach allowed incremental development and shifts of focus which considerably strengthened PATCHATT.
The development of authentic co-production working practices taught us much about the PATCHATT initiative itself. To facilitate patient-led change, we must continue to build working practices which allow for patient autonomy and agency. We must adapt our thinking to the individual needs of our group members as we seek to support their change leadership. Most importantly, we must continue to nurture our commitment to co-production. In PATCHATT sessions, we will use and build on the practices we have outlined here, as we continue to learn about co-production together.
References
Gilbert, D. (2020) The patient revolution. How we can heal the healthcare system. London: Jessica Kingsley Publishers.
Gilson, L., Barasa, E., Brad,y L., Kagwanja, N., Nxumalo, N., Nzinga, J., Molyneux, S. and Tsofa, B. (2021) Collective sensemaking for action: researchers and decision-makers working collaboratively to strengthen health systems. British Medical Journal, doi: 10.1136/bmj.m4650
Johannesen, J. (2018) The trouble with patient and public involvement (PPI)” – Keynote at Cochrane Colloquium 2018 [Online]. Retrieved 6 May 2022 from https://johannesen.ca/2018/09/the-trouble-with-patient-and-public-involvement-ppi-keynote-at-cochrane-colloquium-2018/
Kreber, C. (2013) Authenticity in and through teaching in higher education. The transformative potential of the scholarship of teaching. London: Routledge.
National Institute for Health Research (NIHR)/INVOLVE, Guidance on co-producing a research project. 2021. Retrieved 6 May 2022 from https://www.learningforinvolvement.org.uk/?opportunity=nihr-guidance-on-co-producing-a-research-project
New Economics Foundation (2014) Commissioning for outcomes and co-production. A practical guide for local authorities. London: NEF.
Occlu, J. and Matthews R. (2016) From tokenism to empowerment: progressing patient and public involvement in healthcare improvement. British Medical Journal Quality and Safety 25, 626-632.
Sinath Reddy, K. Ghosh-Jerath. S. and Sadanandan. R. (2021) Health policy and systems research: ethical challenges in co-production of knowledge. The BMJ Opinion. February 16, Retrieved March 2 2022 from
Health policy and systems research: ethical challenges in co-production of knowledge - The BMJ
Authorship
This account is the collaborative work of the PATCHATT development group. All authors contributed to reviewing our joint working. AR wrote the draft of the manuscript, which all authors read and commented on. BH supported the production of a revised draft. The final version was read and approved by all authors.
Affiliations
Claire Dickerson University of Hertfordshire
Barny Hole University of Bristol
Amanda Roberts University of Hertfordshire
Asako Saji Yokohama-shi Kotobuki-cho Kenko Fukushi Koryu center clinic
Learning about patient leadership together
We are always interested in talking with other individuals and organisations who have similar values and aims. Read more about PATCHATT below and do contact us for a chat. It would be great to learn more about patient leadership together.