Depressing statistics are all too familiar for those working with health and social care data. Avoidable deaths, lengthy inpatient stays and patients lingering on waiting lists for important surgeries – we need to consider the lives behind these statistics. But there’s never been anything like what we’ve seen in care homes over the last few weeks.
During the week ending 13 March 2020, there were 2,471 deaths in care homes in England and Wales, according to the ONS. Four weeks later, the weekly number had doubled to 4,927. A week after that, the number stood at 7,316. It’s now risen to 7,911 for the week ending 24 April.
In the United States, Italy and Spain, we saw too that residents of care homes were particularly vulnerable to the pandemic. But still, these numbers are deeply shocking. We don’t yet understand fully how many of the deaths are arising directly from COVID-19 infections, but clearly the virus is taking a massive toll on people living and working in care homes, their families and loved ones.
How can data analytics help?
In January, the Health Foundation launched its Data Analytics for Better Health strategy, which aims to ensure that everyone benefits from analytics and data-driven technology. The word ‘everyone’ is key here – as a charity, we want to help tackle health inequalities. This includes making sure that the benefits of analytics are evenly distributed around the UK, to every community, and across all the health and social care services and settings.
The last few months have seen remarkable innovation with health data. The urgency and challenge of COVID-19 has enabled work to happen at a scale and pace we never thought possible. There is much to celebrate in the massive trials of vaccines that are taking place, and rapid roll out of digital services. But what concerns us is, compared with health data, there is much less innovation happening with social care data. This is worrying given the horrifying statistics being reported by the range of care providers on whom many of the most vulnerable among us rely.
We want to explore what data analytics can do to support social care commissioners, providers, and service users and their carers during the pandemic and beyond. The Health Foundation is already supporting social care analytics through our Advancing Applied Analytics programme. Our analytics teams are pouring over care homes data at the moment, and our Networked Data Lab will also include social care data. But we think we can do more.
To take this forward, we are teaming up with Future Care Capital (FCC), a health and care charity that has championed greater use of data and technology to improve outcomes from both formal and informal social care provision. FCC has explored how to better facilitate care insight, provides support for unpaid carers through online learning and has called, more recently, for the introduction of a ‘Digital Duty of Care’ in the context of its Data That Cares report – a data-driven deep dive into residential care provider markets in England.
Unfortunately, it is not going to be possible to address all of the problems immediately, so we will need two speeds: innovating right now to tackle the urgent need, while building a data system in social care that can serve the needs of its users for the long term.
Taking this forward
The first thing we need to do is engage with people across the sector to understand what the need is for analytics, what work is already underway, and the priorities for strengthening the social care analytics system.
We are rapidly exploring an online workshop to help us understand issues like those below. If you are working in this area and think you can help, we’d love to hear from you. You can get in touch by emailing us.
Following this event, we will share what we learn and consider what our organisations and others working in this space can do to strengthen social care analytics at this point in time.
Right now, public attention is understandably focused on deaths in care homes, and there is clearly a need to better understand what is causing these deaths and how they can be prevented. The impact will vary across the UK and between residential and nursing care homes, and those that care for younger and older people. At the same time, there is a complete lack of publicly available information about how COVID-19 and social distancing measures have affected domiciliary care delivered to people in the community, and what it has done to the scale of unmet and under met need for care. This also needs to be addressed.
In taking this work forward, we need to build on the assets already in the system and this includes the social care analytics workforce in local authorities, larger providers and umbrella bodies. We also need to build on the research that is already underway such as the Learning Care Homes project.
On the data side, every local authority collects administrative data on people receiving social care (though only when their care is at least part publicly funded), and efforts are being made to collate these into a national client-level data set which should be in place by 2022. The larger providers of residential care services across multiple locations in the UK are more digitally mature, as are many providers of domiciliary care which have been giving care workers tablets so they can collect data electronically when they enter their client’s home.
Our starting assumption is that this is likely to include good public sector and service user engagement, the adoption of open analytics practice, strong analytics teams and a digital and data infrastructure that allows researchers, analysts and developers to access the data they need. But we’d like to explore what these mean for the sector.
There are many issues here that need to be explored, including how to establish the right analytical capability. Currently data are overwhelmingly locked up within providers. What changes to procurement practices, governance arrangements and technical infrastructure are needed to support data sharing in social care? How do we go about developing platforms to share code and solutions? How do we build the knowhow and skills to gather insights from social care staff, social care users and their families?