Martin Stevens is Senior Research Fellow at the Social Care Workforce Research Unit at King’s. (811 words)
Personalisation has been a dominant theme in social care policy for 25 years and has also been a strong theme for the Social Care Workforce Research Unit. In addition to our involvement in the Evaluation of the Individual Budgets pilots in 2008 (Glendinning et al 2008), the Unit has completed studies on Risk, Safeguarding and Personal Budgets; personalised employment support: Jobs First; and, on Personal Assistants and Personal Budgets. The Unit has published extensively on this topic, which has also been identified as a context in many other studies.
In March 2018, Think Local Act Personal (TLAP) and the National Institute for Health and Care Excellence (NICE) ran an event to explore research priorities for personalisation: Personalisation: Towards evidence that counts symposium. The results of a programme of work undertaken by TLAP, to consider the existing evidence base for personalisation and identify gaps were presented at the event. The report of this work, entitled Gathering the Evidence: Making Personal Budgets Work for All, is available on the TLAP website.
The report of the event proposes a framework for understanding personalisation and stressed the importance of context, emphasising wellbeing as the ultimate outcome. While this report identifies a lot of evidence to date, going back to the original evaluation of the Individual Budgets pilots in 2008 (Glendinning et al 2008), and argues for increased use of existing evidence and data, it does identify the need for more research. Any new research needs to be broken down by group and area, to identify important variations in outcomes and the impact of personalisation and personal budgets. The report argues for research to focus on outcomes desired by people receiving personal budgets and emphasises the importance of co-production.
In addition to presenting the outcomes of the TLAP work, presentations were made about the NICE approach to evidence gathering and research priorities of the NIHR School for Social Care Research (SSCR). The NICE presentation stressed its reliance on the hierarchy of evidence, placing meta-analyses and Randomised Controlled Trials at the pinnacle, although they acknowledged the value of qualitative research to understand views and experiences. The presentation emphasised the link between NICE and NIHR research priorities and directly into different calls for research proposals.
Professor Martin Knapp, the director of the NIHR School for Social Care Research (SSCR) gave some background on the School, stressing the importance placed on the involvement of people using services and carers. He identified some of the challenges of social care research, including lack of funding and infrastructure. In addition, Professor Knapp stressed the importance of good research commissioning, aimed at generating evidence about the outcomes of personalisation, and of the need to use the results to develop or rethink aspects of related policy and practice. The SSCR are involved in several exercises to identify research priorities for their third phase, starting in May 2019. As with TLAP, the impact of personalisation is highlighted, as is safeguarding.
The report of the event identified the following priorities for personalisation research:
- Wellbeing and what matters to people and their families
- Research on the whole system of care and support
- The role of social networks and community capacity in supporting people (in relation to personalisation and more generally).
- The broader mechanisms for sustaining personalised care and support, including how best to support people using personal budgets.
- The skills, knowledge, competencies and attitudes to risk of health and social care staff – in particular commissioners – which are needed to support personalisation.
- The effectiveness of small-scale solutions to support personalisation was highlighted as important by some groups.
- The role of leadership and the influence that leaders have in the health and social care system was also considered as an area where more research is needed.
- Prevention and maintaining independence and wellbeing.
- Specific groups of people where more research is needed:
- Older people
- People with complex needs
- Care home residents
There appeared to be a consensus, amongst delegates, on the need for more research into the outcomes of personalisation, particularly examining the impact on different groups. There was also an emphasis on appropriate methods and approaches to research, with a focus on longitudinal research being needed.
While there was some discussion of theory and an acknowledgement of work needed to conceptualise personalisation, there was an absence of a critical viewpoint. Many have argued that personalisation is connected with moves to promote market-based solutions, commodify care and withdraw state support (Spolander et al, 2017). One key element of this is the gap in public spending on social care, estimates of which vary from £2.5 billion (King’s Fund) to £5.8 Billion (LGA) by 2020. A truly representative research agenda needs to address these critiques and this essential aspect of the context for developing more personalised social care.
Martin Stevens is Senior Research Fellow at the Social Care Workforce Research Unit at King’s.