Hearing the voices of older adult patients: processes and findings to inform health services research

Plain English summary Whilst Patient and Public Involvement and Engagement (PPIE) are widely regarded as critical to developing clinical research, there is a perception that older adults may not be able to contribute and there is less emphasis on gaining a wide range of opinions before developing research questions or projects; for example an organisational change. This PPIE initiative used three PPIE processes including existing panels and wider networking to access older adults in the community who had used the hospital services and been discharged. Older adults expressed a range of views about their experience of discharge planning and this provided an important perspective on patients’ research priorities associated with their personal independence. Efforts were taken to ensure representative views across a cross section of the population. As a result of this initial PPIE, a permanent, co-ordinated ‘elders’ panel has been established to ensure a representation of older adult views for research, service development and evaluation. This panel has permanent, fully supported members who provide reflection and feedback on any projects and programmes relating to older people’s services in the City. Abstract Background Clinical academic research and service improvement is planned using Patient and Public Involvement and Engagement (PPIE) but older PPIE participants are consulted less often due to the perception that they are vulnerable or hard to engage. Objectives To consult frail older adults about a recently adopted service, discharge to assess (D2A), and to prioritise services improvements and research topics associated with the design and delivery of discharge from hospital. To use successive PPIE processes to enable a permanent PPIE panel to be established. Participants Following guidance from an established hospital PPI panel 27 older adult participants were recruited. Participants from Black, Asian and Minority Ethnic (BAME) communities, affluent and non-affluent areas and varied social circumstances were included. Methods Focus groups and individual interviews were conducted in participants own homes or nearby social venues. Results Priorities for discharge included remaining independent despite often feeling lonely at home; to remain in hospital if needed; and for services to ensure effective communication with families. The main research priority identified was facilitating independence, whilst establishing a permanent PPIE panel involving older adults was viewed favourably. Conclusions Taking a structured approach to PPIE enabled varied older peoples’ voices to express their priorities and concerns into early discharge from hospital, as well as enabling the development of health services research into hospital discharge planning and management. Older people as participants identified research priorities after reflecting on their experiences. Listening and reflection enabled researchers to develop a new “Community PPIE Elders Panel” to create an enduring PPIE infrastructure for frail older housebound people to engage in research design, development and dissemination.