More than a method: trusting relationships, productive tensions, and two-way learning as mechanisms of authentic co-production

Abstract

Background Knowledge mobilisation requires the effective elicitation and blending of different types of knowledge or ways of knowing, to produce hybrid knowledge outputs that are valuable to both knowledge producers (researchers) and knowledge users (health care stakeholders). Patients and service users are a neglected user group, and there is a need for transparent reporting and critical review of methods used to co-produce knowledge with patients. This study aimed to explore the potential of participatory codesign methods as a mechanism of supporting knowledge sharing, and to evaluate this from the perspective of both researchers and patients. Methods A knowledge mobilisation research project using participatory codesign workshops to explore patient involvement in using health data to improve services. To evaluate involvement in the project, multiple qualitative data sources were collected throughout, including a survey informed by the Generic Learning Outcomes framework, an evaluation focus group, and field notes. Analysis was a collective dialogic reflection on project processes and impacts, including comparing and contrasting the key issues from the researcher and contributor perspectives. Results Authentic involvement was seen as the result of “space to talk” and “space to change”. "Space to talk" refers to creating space for shared dialogue, including space for tension and disagreement, and recognising contributor and researcher expertise as equally valuable to the discussion. ‘Space to change’ refers to space to adapt in response to contributor feedback. These were partly facilitated by the use of codesign methods which emphasise visual and iterative working, but contributors emphasised that relational openness was more crucial, and that this needed to apply to the study overall (specifically, how contributors were reimbursed as a demonstration of how their input was valued) to build trust, not just to processes within the workshops. Conclusions Specific methods used within involvement are only one component of effective involvement practice. The relationship between researcher and contributors, and particularly researcher willingness to change their approach in response to feedback, were considered most important by contributors. Productive tension was emphasised as a key mechanism in leading to genuinely hybrid outputs that combined contributor insight and experience with academic knowledge and understanding.

Developing guideline-based key performance indicators for recurrent miscarriage care: lessons from a multi-stage consensus process with a diverse stakeholder group

“…We found that it is possible to involve a range of stakeholders in developing such indicators, including women and men with lived experience of recurrent miscarriage. Participants in our study valued the opportunity to be involved and to discuss and learn from each other, being afforded the ‘space to talk’ [ 36 ], though perhaps some contributors did not feel that they brought equally important knowledge as others. As noted by Rushforth and colleagues [ 17 ], we found that, following lay explanations and rich discussions during the consensus meetings, parent advocates/support group representatives could rate complex recommendations/KPIs and often gave similar opinions as health professionals.…”

European clinical guidelines for Tourette Syndrome and other tic disorders: patients’ perspectives on research and treatment

“…There is a whole terminology in how patients can be involved in research-knowledge sharing, authentic involvement, patient partner (PP) perspective, patient-oriented research (POR) and shared dialogue with co-production being shown as the gold standard. The most important factors in the success of PPI include 'the relationship between researcher and contributors, and particularly researcher willingness to change their approach in response to feedback' [8]. Patient involvement in research agenda setting is suggested to depend on 'the quality of attitude and engagement of researchers and funding agencies' [9].…”

The creative co-design of low back pain education resources

“…Developing participant trust and openness is considered an important factor for successful co-production (Knowles et al, 2021). Preexisting power dynamics and assumptions about who knows best, what works best, and what others think and feel, can be a barrier to constructive communication (Farr et al, 2021).…”

“…Expert healthcare professional status and technical language may give some viewpoints and ideas an unfair advantage (Farr et al, 2021). All stakeholders possess valuable lived experience knowledge and ideas, but some lack the confidence or a method to clearly express them (Knowles et al, 2021). An additional challenge is surfacing deeper tacit and latent knowledge about people's values, feelings and creative ideas.…”