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

Area of Science:

• Health Services Research
• Social Care Policy
• Patient and Public Involvement

Background:

• Integrated care policy and practice emphasize the inclusion of people with lived experience, including family carers.
• A key challenge to effective co-production is the lack of clarity regarding the diverse roles individuals with lived experience undertake.
• Understanding these roles is crucial for successful collaboration between service users and professionals.

Purpose of the Study:

• To identify and define the distinct roles people with lived experience fulfill in health and social care.
• To provide a framework for understanding the contributions and demands of these roles.
• To inform the development of appropriate support mechanisms for individuals with lived experience and their professional collaborators.

Main Methods:

• Qualitative research involving in-depth investigations.
• Collaborative workshops with stakeholders, including people with lived experience and professionals.
• Analysis of research findings and workshop outcomes to identify role categories.

Main Results:

• Four primary roles for people with lived experience were identified: community builder, improvement expert, disruptor/advocate, and citizen leader.
• Each role possesses unique contributions, demands, and requires specific support.
• Recognition of these distinct roles facilitates better integration and collaboration.

Conclusions:

• Clearly defining the roles of people with lived experience is essential for successful co-production in integrated care.
• Tailored support and development are necessary for individuals in these roles and for the professionals working with them.
• This role-based understanding enhances the effectiveness of patient and public involvement in health and social care transformation.