CHANGING PERPECTIVES ON DATA – WHAT DOES IT MEAN FOR CARE HOMES?

A top story headline as I write this blog is that the end of the current coronavirus lockdown in England will be “data-driven not date-driven”. The phase has become such a common mantra as it is regularly repeated in media opinion columns as well as social media. NHS England has announced that more than 17 million people – everyone in the UK in the first 4 priority groups and a few more besides – has now been offered a vaccine against Covid 19. This is a wonderful achievement which brings with it cautious optimism that we may be at the beginning of the end of the pandemic.

As we contemplate the end of the third lockdown I’m struck by how frequently the mainstream news media now references items about “data”. And, together with regular coverage of a range of research studies, we have arguably become a little more familiar with the extent to which we rely on good data to be informed and in order to make decisions. Emphasis is now being put on the crucial importance of data to shape the Government’s eagerly anticipated ‘road-map’ for easing restrictions. I really hope that this will also bring an enduring recognition of the vital importance of data and analysis beyond how we deal appropriately with the impact of a pandemic.

I have long been of the view that inconsistency in data collection and the paucity of data sharing within adult social care (especially relating care homes) has hindered its development. Even for some professional groups in recognising the professional contribution of care homes. During the last 12 months care homes have been regularly featured in the news. Unfortunately, too many of the stories have been negative ones focused initially on the disproportionately high death rate amongst residents in care homes and, more recently, the ongoing difficulties around visiting. The fragmented nature of care home provision in England along with the lack of integration with health services has had more prominence. Arguably the system issues and challenges faced by the care home sector have also been rather more nuanced as a result of all the media coverage. It is not surprising therefore to discover that there is no agreed framework in England for collating, sharing and interpreting data for care homes except for that collected by the Care Quality Commission as regulator.

DACHA is Developing research resources And minimum data set for Care Homes’ Adoption and use is an ARC East of England supported study being led by the University of Hertfordshire and funded by the National Institute for Health Research (NIHR). The four-year project started in November 2019.

The study is about care homes and the data (or information) collected about the people who live in them. The aim is to explore and enhance how data about resident quality of life and care are shared between health and social care organisations working with care homes, and with family members, in a way that benefits all. There are five, linked streams of work called work packages. The collaborators on the project are from seven ARCs, nine universities, the National Care Forum, The Health Foundation, and the Alzheimer’s Society Research Network.

The DACHA study aims to develop a prototype Minimum Data Set (MDS) to be adopted and used by care homes. This has the potential to benefit the health and well-being of people living in care homes. Many residents in care homes for older people are living with dementia. Many residents are affected by long term physical conditions. The study recognises that the development of a usable MDS will need to take account of the day to day practices and experiences of staff in both direct care roles and care home management roles as they and their activities are likely to be an important source of data for a MDS.

Care homes collect and make use of data on a daily basis to assess and monitor need, support care planning, allocate resources and evaluate interventions. Increasingly care homes are making use of information systems for medication, assessment and planning and sharing such data with health professionals, commissioning staff or the regulator. Although such intelligence-led systems, often supported by IT, are becoming more prevalent there are no nationally agreed systematic approaches to their development and no common format to data collection. Add to this the fragmented and diverse nature of care home provision in the UK, and there is, as a consequence, limited ability to be able to utilise the data that does exist.

 

The fact that the commencing of the study has coincided with the Covid-19 pandemic will, I believe, further serve to accentuate the importance of data and how it is used by, and for, care homes. Huge amounts of information are collected routinely within care homes. They are a necessary part of the process of providing professional care and support. I’m assuming that most people, including those with relatives who live in care homes, spend very little time considering the information (or data) that underpins the process of providing care and support. Certainly, most callers to the Relatives & Residents Association (R&RA) Helpline over the last 12 months haven’t mentioned data specifically. They complain their relatives are deteriorating due to the lack of social contact with their families – both their physical health and their mental health. Family members are likely to emphasise aspects such as the loss of weight or the loss of speech or their mood or that they no longer recognise their relatives. All these aspects of well-being should be regularly monitored by care staff and recorded as part of the care planning process that shapes effective care and support. This is in fact data that has a direct impact on quality of life. Family carers can be invaluable partners in the provision of social support offering crucial practical and emotional assistance which relieves distress and is fundamental to people’s personal well-being. The restrictions put in place to protect people living and working in care homes from Covid 19 have undoubtedly undermined these efforts which is why there have been calls by many different interest groups to enable visits to be reintroduced into all care homes as soon as possible. Care provider organisations and charities have been arguing for clear, practical guidance from the Government on managing visits in safe ways.

It is my firm belief that the privilege of being involved as a trustee of several charities within the care sector: The Relatives and Residents Association; Greensleeves Care and My Home Life means that I have the benefit of complementary, but differing, perspectives on the issues surrounding data. Somewhat different views then from those receiving care and support services and their families, a not-for-profit care provider and an organisation with the primarily aim of enhancing quality of life for people living, visiting and working in care homes. This has served to reinforce, for me, the value that good data can bring. I am pleased to have been invited to chair the DACHA study steering group. I hope that by drawing on these differing perspectives, together with a lifetime’s experience of working in the social care sector, I can make a constructive contribution to the debates that will inevitably be raised by the study strands within this valuable project.

Des Kelly OBE | R&RA Trustee | 19 February 2021

Funding Acknowledgement and Disclaimer

This study/project is funded by the National Institute for Health Research (NIHR) Health Service Research and Delivery programme (HS&DR NIHR127234) and supported by the NIHR Applied Research Collaboration (ARC) East of England.

The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.