Data in the Time of Pandemic

Data collection has become a major political issue during the COVID-19 pandemic. For the early part of this crisis the only meaningful figures everyone knew for certain were the number of deaths of COVID-19-positive people who had died in hospital.

Social Care Digital Transformation Blog
Daniel Casson Care England Digital Development Executive

Data collection has become a major political issue during the COVID-19 pandemic. For the early part of this crisis the only meaningful figures everyone knew for certain were the number of deaths of COVID-19-positive people who had died in hospital. It was soon realised that these gave only a partial picture of the real situation. Since then we have gradually gained greater insight via the ONS figures, some figures which the NHS is releasing and from improved data collection in the care sector. For the data at hand to have real impact there needs to be greater coordination and engagement with providers on what data should be collected and for what purposes.

The provision of social care in this pandemic has been hampered by the extreme lack of vital information. There was no certified way to get an overall picture of vital issues such as:
• the number of people who had suspected COVID-19 symptoms or a positive test on discharge from hospital;
• the staffing sickness levels;
• information on PPE provisions to the sector; and
• deaths in the care homes.
Many of the data issues were sorted out by the swift adoption of the Capacity Tracker to record data from care homes and by a tool developed by the CQC with Microsoft for collection of data from home care. A major issue has been the wait till the end of April for data-evidenced analysis of the situation in care.

Now, in mid-May, data collection is taking centre stage. The actions that result from collection of the data rely on triangulation of the work being carried out by the local authorities and the CQC, linking to the Local Resilience Forums and the emergency frameworks. The concern in the sector is that the purpose of data collection and investigation should be informing continuous improvement rather than simply contract and performance management. There is now a tacit agreement that data collected during the COVID-19 crisis will be used to help ensure that care is resourced properly and that care providers are given support and guidance where needed and appropriate, which is a step in the right direction.

At the time of writing over 50% of local authorities are not registered on capacity tracker, even though 97% of homes are registered and giving data. The latter figure means that every DASS in England can receive by 1230 every day a meaningful report on the previous day’s care data in their area. The teams at the NHS’ North of England Commissioning Support Unit (responsible for Capacity Tracker), the CQC and the LGA are making tremendous efforts to collect the data and deliver the figures. There is still work to be done on analysis and correlation of the data sets to show the progress and in order to be able to start predicting where issues might arise.

There are pockets of the country (London being a case in point) where local authorities are continuing to insist on their own data collection platforms, placing an extra burden on the care sector at a time when resources are stretched and we are struggling to cope with the issues presented by the COVID-19 crisis. Sometimes it is hard to marry up the data with the reports from the front line. For example, recent figures show that staffing levels are about 12% down which does not appear to correlate with the experience of the individual provider organisations. There needs to be further work done on the ground, and there needs to be a focus on data analysis, which has traditionally been an area which has not received sufficient resources in social care.

We know that in about 30% of care homes, there is some facility for Electronic Care Planning. Belatedly there are efforts to collate this data securely and then join the data from these systems with national data to get a real time picture of what is happening in these 30% of homes: these results could then be extrapolated to provide some insight into the overall picture. Over time, expanding this coverage as the care sector matures digitally is an exciting prospect. Effective data collection and subsequent analysis could for example be used to forecast how a pandemic might move within care settings, and the varying factors of location, demographics and workforce issues could then be factored in. If the data could be incorporated into an anonymised open dataset, then it would open the way to independent investigation and analysis.

As in many areas of tech adoption during this crisis, what has been achieved in the area of data collection and analysis in the past two months should be the springboard for new solutions. For example, there has to be greater focus on linking the remote monitoring and connectivity tools with the care planning process to ensure transparency, real time data and evidence-driven improvement. The value created by digital technology in the sector currently is undoubted: the real value it will create in the future is the ability to build an even better more integrated, more personalised care service. Simon Swift, Hon. Associate Professor at the University of Exeter (INDEX) Business School takes this idea further:
“Bringing together data automatically from care systems to provide impactful and role appropriate intelligence for individual care, care providers, commissioners and regulators, without any additional form filling is a huge opportunity to improve care, the opening to do something at scale now should be taken.”

The role for us in the sector is to unite across the different areas and the disparate structures to decide on the right data sets and the right processes both to manage this continuing crisis and beyond.

I will leave this blog with one thought: there is one piece of the care data puzzle which still appears to be hard to pin down in the current crisis: the number of people discharged from hospital to care homes over the past two months. This is an important omission: access to this data would help us analyse the expectations placed on care homes in the current crisis and the unprepared state they were in due to lack of resources and lack of a coordinated response.