Involving Service Users and their Carers as Equal Partners in a Project Using Electronic Communication

Abstract

This paper presents a research team's experience using a virtual steering group to manage a research project. The main research project was concerned with the evaluation and development of interprofessional working among health and social care staff across primary and secondary care in the United Kingdom, with a focus on older people receiving intermediate care. Intermediate care is a service aimed at preventing unnecessary hospital admission; supporting early discharge from hospital; and reducing or delaying the need for residential care in the community. Intermediate care covers multi-agency and interprofessional working across the continuum of care. We examine one aspect--the use of a virtual steering group, which is an innovative approach aimed at facilitating user and carer participation in the research in a supportive and less intimidating way. The research team includes academics, practitioners, older people and carers, and representatives from the voluntary sector--all are equal members. The team believes it is important to actively involve clients and their carers in the development and direction of research because they can provide a unique perspective ensuring that the research addresses issues of importance to them as service users. We examine and discuss the importance of preparation, support, and training to meaningfully engage in the virtual steering group and the direction of this research. The paper concludes by making recommendations about this model of involving service users in research.

The Involvement of Users and Carers in Health and Social Research: The Realities of Inclusion and Engagement

“…All meetings were supported by the independent facilitator and researcher. By adopting this strategy, the users and carers were able to develop an understanding of the research approach and methodology, as well as to clarify understanding to apply their expertise that informed and directed the research (Ashby, Maslin-Prothero, & Rout, 2007).…”

“…The steering group was initially managed by the res earchers using email, as a virtual group, and then later using Web Course Tools (WebCT), an online proprietary virtual learning environment system. It was felt that the use of older users and carers as a virtual steering group would allow them to participate in the research process in a more supportive and less intimidating way; this was an innovative and alternative approach to project management (Ashby et al, 2007).…”

Mapping the role of patient and public involvement during the different stages of healthcare innovation: A scoping review

“…Participation in research activities was described in 14 studies (16%) 24–27,34,59–66,83 . Patients and the public participated in various ways, through advisory and face‐to‐face discussion groups, 34,62,63 virtual steering groups, 59 online surveys and workshops 26 and network activities 65 .…”

“…19,37,49,[83][84][85] Participation in research activities was described in 14 studies (16%). [24][25][26][27]34,[59][60][61][62][63][64][65][66]83 Patients and the public participated in various ways, through advisory and face-to-face discussion groups, 34,62,63 virtual steering groups, 59 online surveys and workshops 26 and network activities. 65 Some innovative initiatives included video-reflexive ethnography that allowed clinicians to explore the needs of patients and their families in end-of-life care.…”

Effective public involvement in the HoST-D Programme for dementia home care support: From proposal and design to methods of data collection (innovative practice)

“…Other possibilities of involving service users and carers is via postal consultations (Burnell et al, 2015), online expert panels (Khodyakov et al, 2016), or via a virtual steering committee, which oversees an entire programme. Ashby, Maslin-Prothero, and Rout (2007) employed such a steering committee on a six-weekly basis, whilst sending out related documents prior to the virtual meeting. Involving older adults in such a format to discuss research with academics allowed them to grow in confidence.…”