Setting priorities for social care research in Wales project protocol

Purpose of the project and background

The purpose of this protocol is to clearly set out the aims, objectives and commitments of the Research Prioritisation Project “How can we best provide sustainable care and support to help older people live happier and more fulfilling lives?”

The project is being run by Health and Care Research Wales and Social Care Wales in association with the James Lind Alliance (JLA). Whilst the project is not following the full JLA Priority Setting Partnership (PSP) process, it will be mindful of the fundamental principles, including that of fairness and transparency. The Working Group will review the Protocol regularly and any updated version will be sent to the JLA and published on its website.

The JLA is a non-profit making initiative, established in 2004. It brings patients, carers and clinicians together in PSPs. These PSPs identify and prioritise the evidence uncertainties, or ‘unanswered questions’, that they agree are the most important for research in their topic area. The aim of a PSP is to help ensure that those who fund health and care research are aware of what really matters to patients, carers and clinicians. The National Institute for Health Research (NIHR – www.nihr.ac.uk) coordinates the infrastructure of the JLA to oversee the processes for PSPs, based at the NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC), University of Southampton.

Health and Care Research Wales (HCRW) is a national, multi-faceted, virtual organisation funded and overseen by the Welsh Government’s Research and Development Division in the Population Health Directorate. It provides an infrastructure to support and increase capacity in research and development across health and social care areas, runs a range of responsive funding schemes and manages the NHS R&D funding allocation. https://www.healthandcareresearch.gov.wales/

Welsh Government Directorate of Social Services & Integration provides leadership to Social Services in Wales to ensure they can deliver the required changes in services and culture set out in A Healthier Wales, the Welsh Government’s plan for the future of health and social care, published in June 2018. https://www.gov.wales/healthier-wales-long-term-plan-health-and-social-care.

Social Care Wales (SCW) works with people who use care and support services and organisations to lead and support improvement in social care in Wales and to build confidence in the workforce. In 2018 in partnership with HCRW they developed a social care research strategy for Wales. https://socialcare.wales/research-and-data/research-strategy-for-wales

In early April 2020, HCRW and SCW decided to work together on a project to establish research priorities for a topic relating to social care in Wales. This was to be a pilot project, developing and assessing a new research prioritisation process for HCRW. The priority for the pilot is to ensure that the views of service users, carers and social care practitioners are the starting point for the development of research priorities. In late April 2020, in consultation with the JLA, HCRW and SCW drafted the new process based on the JLA principles, and appointed a senior JLA advisor to the project. Comments on the draft process were sought from a number of other organisations and a Working Group was convened. At their first meeting on 11 May 2020, the Working Group agreed that the pilot project would focus on social care and support for older people, with a focus on enabling health and wellbeing. The drive behind the project is understand where new research is needed to help us answer the question: “How can we best provide sustainable care and support to help older people live happier and more fulfilling lives?”

Scope, aims and objectives of the project

The aims of the Project are

1. to identify the most pressing concerns from service-user, carer and practitioner perspectives relating to social care support for older people, with a focus on enabling health and well-being, and then to prioritise those that service-users, carers and practitioners agree are the most important for research to address.
2. to take these research priorities to a wider group of stakeholders including researchers and funders to develop these priorities into tractable research questions

The objectives of Part 1 of the Project are to:

• work with service-users, carers and practitioners to identify uncertainties about the delivery of social care and support to older people in order to enable health and wellbeing.
• to agree by consensus a prioritised list of those uncertainties, for research
• to publicise the results of the Part 1 and process
• to take the results forward into Part 2 of the project.

The objectives of Part 2 of the Project are to:

• work with researchers on each of the areas research priority identified in Stage 1 to decide the approach to further work that is needed for each. There will be a variety of approaches required: from new research evidence, new evidence syntheses, dissemination, or working with others to promote knowledge mobilisation. Priority will be given to the development of tractable research questions.
• to publicise the results of the Project and the project process
• to take the results forward into a longer-term work plan for HCRW, including the development of HCRW funding schemes, and work with NIHR and other funders.

The scope of the Project is defined as looking at:

• Evidence needs to help provide sustainable care and support services for older people in Wales that enable health and wellbein
• where these social care and support services are

o received by people aged 65 or over
o delivered by Local Authorities, community initiatives, the third sector, private enterprises or family and
other unpaid carers;
o received in any care and support setting (at home, in the community, in residential care homes,
nursing homes or supported living).

• and where evidence needs include (but are not limited to) those that relate to:

o the impact and value of health and social care interventions for health and wellbeing;
o the sustainability of those services, including considerations of efficiency, effectiveness;
cost-containment; and flexibility to adapt to peaks in demand
o interventions that enable / promote independence
o interventions that prevent an escalation of need for more intensive social care and health
services;
o whole system” aspects of social care such as the balance between public, community and
private provision and integration of health and social care services;
o how provision could, should or might need to change in future, including considerations of the
impact of COVID-19 on health and care needs.

The Project will exclude from its scope questions about care and support that

• relates to younger age groups (<65 years)
• do not relate back to enabling health and well-being or the prevention agenda, or “supporting older people to live happier and more fulfilling lives”

The Working Group is responsible for discussing what implications the scope of the project will have for the evidence-checking stage of the process. Resources and expertise will be put in place to do this evidence checking.

The Working Group

The project is led and managed by a Working Group involving the following:

Following topic selection (Stage 1 of the project) the Working Group was expanded to include three additional members:

The Working Group has oversight of, and takes key decisions on, the Social Care Research Prioritisation Pilot Project, and are advised by the Senior JLA Advisor. Key decisions include project scope; communications plan; engagement with partner organisations; approval of the project plan, survey design and workshop design; and oversight of development of the indicative questions and tractable research questions.

Decisions on the following areas remain with Welsh Government Research & Development Division and Health and Care Research Wales: Resource allocation and procurement to the project; decisions relating to Health Care Research Wales research funding; engagement with other funders with a view to contributing research questions to commissioned calls; follow-up work that takes place after the close of the project.

Partners

Organisations and groups will be invited to be involved with the Project as partners. One representative partner organisation will be invited to join the Working Group.

The partners will help promote the Project and encourage their represented groups or members to participate. Partners represent the following groups:

• People 65 years or above in receipt of care and support services in Wales
• Their carers
• Health and social care professionals and others providing care and support services in Wales to people 65 years or above.

Exclusion criteria

Some organisations may be judged by the Working Group to have conflicts of interest, for example those with a commercial interest. These may be perceived to potentially cause unacceptable bias to the project. As this is likely to affect the ultimate findings of the project, those organisations will not be invited to participate. It is possible, however, that interested parties may participate in a purely observational capacity when the Working Group considers it may be helpful.

The methods the Project will use

This pilot project tests a rapid version of full JLA PSP process, and adds two additional stages to the process where the top research priorities identified in the first workshop are (a) developed into tractable research questions and then (b) developed into a longer-term work programme that will be taken forward by Health and Care Research Wales.

The processes that will be used in this project has been set out in a separate document (Research-Prioritisation-Social-Care-Pilot-Project-Plan), which was agreed by the Working Group on 11 May 2020, and will be regularly reviewed and amended by that group, with advice from the JLA Advisor. To summarise, the steps will be:

• Consultation via online survey to gather questions about the delivery of social care and support to older people
• Analysis of the consultation data, to develop summary questions
• Review of summary questions against existing evidence
• Prioritisation of unanswered questions by service-users, carers, practitioners and their representatives, via online survey and online workshop discussions.
• Further consideration of the existing evidence in relation to the priority research areas
• Development by researchers, funders and other stakeholders of these priority areas into tractable research questions and/or wider dissemination or knowledge mobilisation activity.

Agreement of the Working Group

The Working Group agreed the content and direction of this Protocol on 18 May 2020.