Abstract
Background: This study captured the stories of citizen leaders from around the world to learn about their roles, challenges, and impact they had in order to formulate recommendations for research, policy and practice to embed them meaningfully in the system.
Consumer and community engagement is integral to integrated care, so these stories are relevant for everyone: professionals, researchers, policy makers and consumers.
Successful steps towards research co-design: The concept of storytelling was the basis for narrative interviews with people with lived experience as a patient, carer or service user, and the subsequent analyses. Participants for the study (n= 25 from 12 countries) were recruited based on purposeful sampling through integrated care practice and academic networks including those facilitated by the International Foundation for Integrated Care. The following questions were co-designed with the Community Advisory Board of the University of Birmingham to define what a citizen leader represents without using the term:
•Have you accessed health and / or social care services as a patient / service recipient or as a family caregiver?
•Have you contributed to activities relating to the review, development or oversight of health and care services, or spoken out as a campaigner or activist to make services better?
•Have these activities been seeking to make services more integrated (i.e. person-centred and coordinated across professionals and services)?
Interviews were conducted in English or the native language from February to June 2022. The Community Advisory Board also supported the development of the interview guide. Throughout the analysis the participants were invited to engage in the process of interpretation through written comments and feedback, or online meetings. In addition all were invited to two online workshops where preliminary findings were presented and discussed together with them. These led to important additions in the description of roles, and a reinterpretation of some of the results, adding emphasis on the importance of language, cultural and historical background, diversity and inclusivity. The study mixed consultation, engagement and co-design. The results will be co-presented with one of the Australian citizen leaders to contextualise the findings for the conference audience.
The study report describes the different roles people with lived experience need to take on in order to be heard, such as advocate, disruptor or champion. It also highlights the many competences people need to develop in order to fulfil these roles. Based on the enablers and barriers identified, it summarises recommendations for research, practice and policy to finally take co-production seriously.
Take-away messages and next steps: While there are some inspiring stories, these happen despite the system and not because of it. Tokenism was a common term used, when consumers were invited in by the system. It is high time to stop paying lip service to person-centredness and make it happen.
The research has led to the establishment of a working group of people with lived experience and the International Journal of Integrated Care to develop a community engagement strategy for the Journal, including the roles of reviewers, authors and editors.