Citizen Leadership of Integrated Care: Stories of Value

Abstract

This workshop will encourage reflection on the importance of co-producing integrated care policies and programmes with citizen leaders, i.e. those with lived experience of health and social care who take on the role of strategic influencers by choice or default. It will use the stories of citizen leaders from across the world gathered through narrative research to encourage participants to share their own experiences of the value of co-production and how such leadership can be encouraged in practice. Participants will leave the workshop with a greater understanding of the enablers and barriers and a collective sense of the potential value of such leadership. People with lived experience have been involved throughout the research and will present at the workshop.Background: For integrated care to reflect the interests and aspirations of people and their communities it is vital that 'citizen leaders' with lived experience of health and social care are able to influence strategic visions and their implementation. In reality though, such leadership is rarely encouraged in practice. Aims:To enable participants to engage with the stories of citizen leaders of integrated care from across the world and compare with their own experiences To facilitate shared reflection on the value of co-production with citizen leaders and why this value is not realised in practiceTo identify what would help to embed citizen leadership more consistently within the development and oversight of integrated care policy and programme Audience: We would hope for an audience which reflects the diversity of stakeholders who are involved in developing integrated care policies and programmes -i.e. people with lived experience, practice leaders, programme directors, researchers, and policy makers.Facilitators: Overall coordination and facilitation of workshop by Robin Miller & Viktoria Steinthis will include guiding participants through the purpose and process, introducing speakers, encouraging contribution, and chairing discussions. Small group discussions will be run in person and on line by the wider research team, including

Just a story? Leadership, lived experience and integrated care

“…41 Central to leadership influence of people with lived experience was their ability to tell stories. 14 This reflects wider studies which emphasise the importance of storytelling to 'create both a vision of the future and a coherent sense of the past'. 43,p.474 While each person will have their own story and in time develop their own unique approach to telling this, there are techniques which can be taught to help personal stories take shape and impact on an audience.…”

“…| 7 of 9 integrated care programmes take an unstructured, undisciplined, and arguably unethical approach when people to share their stories. 14 In doing so, they risk further traumatising people through asking them to relive challenging and painful experiences without putting in appropriate emotional support. Furthermore, managers and professionals often seek to place boundaries so that they, rather than the person concerned, decide on what stories should focus on and where they will be told.…”

“…Such passivity has been rejected by people themselves, who have instead taken up active roles in shaping what and how they influence. 14 In doing so they are demonstrating citizen leaders who 'have power … and [use this to] take actions for the benefits of other citizens'. 15,p.4 They are 'changing the rules of the game, to empower non-powerful others to have an effective voice or role in solving public problems'.…”

Builder, Expert, Disruptor, Leader: The Many Roles of People with Lived Experience

“…The idea arose through discussions with a community advisory board of people with lived experience, and how their leadership differed (or not) from leadership demonstrated by professionals and managers. The project heard the stories of people with lived experience from many countries and highlighted not only the many challenges and barriers but also good examples of how co-production can work in practice [ 7 ].…”

“…Others, and arguably these are the most problematic, relate to cultural norms within professional and managerial practice which view expertise based on lived experience as being of lesser importance to that based on formal education and management status. These obstacles, and the potential solutions to addressing them, were recently studied in an international research project (7). The idea arose through discussions with a community advisory board of people with lived experience, and how their leadership differed (or not) from leadership demonstrated by professionals and managers.…”