How the REAL Demand Unit involved the public in priority setting

Authors: Anna Mae Scott, Sasha Shepperd, Georgina McMasters 

Background 

“Social care” includes services to assist individuals with activities of daily living, such as laundry, cleaning, meal preparation, social activities, shopping, dressing, and washing (Department of Health and Social Care, 2021). Individuals may require social care services due to age, illness, disability, pregnancy, childbirth, dependence on alcohol or drugs, etc. (Government of the UK, 2014; NICE, 2015). 

The cost to governments and individuals, of providing social care, is expected to continue to grow. This is due to increased life expectancy, more years lived in poor health, increasing numbers of younger people with disabilities who are living longer, and long-term conditions such as dementia, which require greater reliance on social care as they progress (MacLeod, 2021; Subbe, 2017; Wittenberg, 2019). 

Governments––both in the UK and internationally––recognize that the availability of social care services should be fair, but it is not currently clear how best to implement this (Department of Health and Social Care, 2021). 

The REAL Demand Research Unit 

The Research and Economic Analysis for the Long-term (REAL) Demand Research Unit was funded in 2023 by the Health Foundation’s REAL Research Units program. The Unit is part of the Nuffield Department of Population Health at the University of Oxford. 

The REAL Demand Unit conducts research to improve the quality of long-term decision-making in health and social care to ensure that decisions are made on the best available evidence. The Unit’s work focuses on three key themes: 

1. What drives demand for health and social care, and how does that change over time? 

2. How does the demand for health and social care differ by geographical region?

3. What are the methods for dealing with uncertainty of the demand? 

Setting up the REAL Demand Unit’s PPIE Panel 

Meaningful stakeholder engagement in co-design and co-conduct of research is increasingly being promoted––and adopted––because it improves the relevance of research, increases trust in its findings, and improves research adaptation (Boaz et al., 2018). To identify and prioritize key research questions within each of the three themes, the REAL Demand Unit set up the REAL Demand Patient and Public Involvement and Engagement Panel (REAL Demand PPIE Panel).  

To identify members for the PPIE Panel, we reached out to General Practices (GPs) across England in October 2023, asking them to disseminate our invitation to participate, together with a link to a webpage with further information about the unit. Interested individuals submitted expressions of interest at the website.  From those submissions, the REAL Demand Unit’s research team created a priority list of individuals to interview, with an eye toward maximizing the panel’s diversity in terms of gender, age, ethnicity, geographic location, prior experiences in social care, etc. 

We conducted the interviews in early 2024, and three people were selected to form the REAL Demand PPIE Panel. The remainder of the panel––12 individuals––was drawn from the existing Nuffield Department Population Health’s PPIE Panel. 

In total, 15 individuals comprise the REAL Demand Unit’s PPIE Panel. The panel participants are diverse, consisting of 8 women and 7 men, aged from 18 to 84, from mixed ethnic and educational backgrounds. Twelve of the 15 members have experience using health and/or social care services in the previous 12 months. 

Identifying social care research priorities by the REAL Demand PPIE Panel

Prior to the first meeting of the REAL Demand PPIE Panel, we asked the panel members to reflect on four questions:  

1. What problems do you perceive with the current provision of health and social care?

2. What are the consequences of the lack of provision of health and social care and in what areas?

3. Are there certain groups of people with particular health problems who in the next 5 to 10 years might require more health and social care?

4. Are there households with different access to social support or who live in specific geographical areas that might be more affected by a lack of provision?

The first PPIE Panel meeting was held on 17 April 2024, online, and lasted 90 minutes. Twelve panel members were able to attend––as well as three members of the research team and two members of the NDPH’s PPIE Office. 

The meeting was co-chaired by a member of the REAL Demand PPIE Panel (GMcM) and a member of the research team (SS). Following the introductions and background to the research, the participants split into four breakout rooms to discuss the four questions. Notes were taken by research team members to provide the panel members maximum time to share their views. 

Following the meeting, nine panel members sent additional notes about the four questions via email. All meeting and post-meeting notes were collated, a draft report was produced and reviewed by the meeting co-chairs. The final version of the report was then circulated to the panel members for reference and comment. Panel members were reimbursed for their expenses, in line with UK standards.

Research topics identified by the REAL Demand PPIE Panel 

For each of the four questions, the REAL Demand PPIE Panel members identified key issues relevant to that question, and raised numerous sub-questions within each issue (see Table 1). 

Table 1: Key issues identified by the REAL Demand PPIE Panel members

Next steps: topic prioritization 

To prepare for the topic prioritization exercise, we first removed sub-questions that were outside the scope of the REAL Demand Unit (e.g., those relating to workforce supply issues, rather than demand for services). 

Similar sub-questions were grouped to form of an actionable research question––for example “How does the different funding model for health (national) and social care (local) affect service delivery and inequalities?” or “How does climate change affect the demand for health and social care now and in the future?” 

In total, 21 research questions were identified. A list of these questions will be sent to the PPIE Panel as a survey, with a request to rank their importance from 1 (highest importance) to 10 (lowest importance). 

The resulting top 10 list of highest priority questions will inform research that will be conducted in the second phase of the REAL Demand Unit’s work, set to commence from mid-2025. 

Lessons learned 

We learned several lessons while setting up the REAL Demand Unit’s PPIE Panel. 

• Online meetings promote better accessibility in terms of geography, but involve technical challenges. We conducted the first meeting using four breakout rooms to correspond to four questions, but due to technical challenges one of the breakout rooms was non-operational, and two breakout rooms had to be amalgamated. In the future, we will minimize the number of breakout rooms to mitigate this issue. Having additional colleagues on hand to assist with technical problems was essential.  
   
• We found it helpful to provide the meeting questions to the panel members prior to the meeting, and requesting additional thoughts post-meeting. This approach catered to different ways of working––for example, allowing those who prefer to do so, to reflect about the topics ahead of time (and prepare notes). It also allowed them to subsequently share any further reflections informed by the discussions with the other panel members during the meeting. 
   
• The meeting was co-chaired by a member of the panel and a member of the research team. This was implemented to ensure that all participants contributed to discussions and perspectives. The range of ideas that arose from this meeting confirmed the value of using a panel of diverse lay partners. 
   
• We are currently considering how to ensure continuous engagement with the panel members throughout the project, as the flow of involvement opportunities is not consistent throughout. 

References

Boaz, A., Hanney, S., Borst, R., O'Shea, A., & Kok, M. (2018). How to engage stakeholders in research: design principles to support improvement. Health Research Policy and Systems, 16(1), 60.

Department of Health and Social Care (UK). (December 2021). People at the Heart of Care: Adult Social Care Reform White Paper. https://assets.publishing.service.gov.uk/media/6234b0a6e90e0779a18d3f46/people-at-the-heart-of-care-asc-reform-accessible-with-correction-slip.pdf

Government of the United Kingdom. (2014). Care Act 2014. Chapter 23, Section 92(5). https://www.legislation.gov.uk/ukpga/2014/23/pdfs/ukpga_20140023_en.pdf

MacLeod, C. A., Bu, F., Rutherford, A. C., Phillips, J., Woods, R., & CFAS WALES research team (2020). Cognitive impairment negatively impacts allied health service uptake: Investigating the association between health and service use. SSM - Population Health, 13, 100720. 

National Institute for Health and Care Excellence (NICE). (November 2015). Older people with social care needs and multiple long-term conditions: NICE guideline [NG22]. https://www.nice.org.uk/guidance/ng22/chapter/recommendations

Subbe, C. P., Goulden, N., Mawdsley, K., & Smith, R. (2017). Anticipating care needs of patients after discharge from hospital: Frail and elderly patients without physiological abnormality on day of admission are more likely to require social services input. European Journal of Internal Medicine, 45, 74–77.

Wittenberg, R., Knapp, M., Hu, B., Comas-Herrera, A., King, D., Rehill, A., Shi, C., Banerjee, S., Patel, A., Jagger, C., & Kingston, A. (2019). The costs of dementia in England. International Journal of Geriatric Psychiatry, 34(7), 1095–1103. 

To link to this article - DOI: https://doi.org/10.70253/XOBB6346

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