The director of a leading UK health data organisation, which is advising the government's Scientific Advisory Group for Emergencies (SAGE) on the public response to the COVID-19 pandemic, has said that the lack of data and intelligence in social care has been a "catastrophe" and that there are still a number of unknowns for this "significant community".
The comments come after widespread criticism of the government's handling of the spread of COVID-19 within social care environments, with a significant proportion of deaths being attributed to those living in care homes. There have been reports of elderly people going into hospital for treatments unrelated to COVID-19, for example, and then being sent back into their care homes without having had a Coronavirus test. The ONS has said that approximately 27.3% of all care home deaths between 2nd March and 1 May 2020 involved COVID-19 (12,526).
It's been a catastrophe, the lack of information and intelligence and huge data deficit in social care, specifically in care homes. One has to be reminded that there are 400,000 people living in 10,000 care homes across the UK. It was almost a complete data black hole. We couldn't even define key variables such as the denominator.
Then you've got care at home. I think what COVID-19 has done is really shine a light on the need to have far better information and intelligence on this very significant community. At the moment we are still wrestling with major data deficits and unknowns. I think we need a concerted effort to address this gap.
Health Data Research UK has grown from being a £37 million organisation to a £200 million organisation since the start of the COVID-19 pandemic. Morris believes that the UK needs a robust, trustworthy health and social care data infrastructure to respond to COVID-19, but also future pandemics, and is working with government, academics, public services and industry to try and achieve this.
The organisation's 20 year vision is for large scale data and advanced analytics to benefit every patient interaction, clinical trial, biomedical discovery and enhance public health. It hopes that in the future it can run studies on up to 66 million people (the entire population of the UK) in a trustworthy way. Morris said:
We unite health data, we use health data and we improve health data at scale. All underpinned by good governance, public engagement and public trust.
COVID required us to pivot, but also to work in partnership, arguably on a scale never seen before. We are living through history.
Data at scale
Morris said that when the realities of COVID-19 began to sink in, Health Data Research UK did three key things as a priority. Firstly it coordinated and connected with national data science research initiatives. Secondly it began to work with partners to enable access to UK-wide priority data. And thirdly it focused on funnelling important research questions for government policy makers, system leaders and patients.
Working with SAGE, it is now primarily focused on developing this research funnel where it prioritises these "compelling research questions" that could help enable the response to the COVID-19 pandemic. The organisation is now publishing on a weekly basis to SAGE the impact that data research has made.
Some of the findings coming out of health data research include: dexamethasone reduces mortality in severe COVID-19 patients; people with underlying health conditions, such as cancer, have poorer outcomes from COVID-19; provision of cancer care has been interrupted; people from BAME groups are at higher risk of mortality from COVID-19; diet and obesity has an impact on people's outcomes from COVID-19; and young adults and parents are the groups suffering most with mental health issues.
The research questions being asked of the pandemic have been prioritised by a task force brought together of 1,300 academics. There are currently 40 questions being asked that are a priority for health data researchers. In terms of what's needed to get answers, Morris said:
To do that we need a data infrastructure. Working in partnership across England, Scotland, Wales and Northern Ireland in trusted research environments, we've enabled these to actually look and enable the research questions that have been prioritised. All these datasets and tools are available on healthdatagateway.org - you can go on that now and search on those 450 datasets. We want to see better use of linked-to datasets, to address the challenges of COVID.
In addition to this, Health Data Research UK has also mobilised a public advisory board and lay panel consisting of 62 members of the public, which are advising on the priority research questions and also how health data can be used in a trustworthy way. Morris said:
One of the principles of the five safe models is safe projects. And for me, use of any data needs to pass what I call a public interest test. There are models across the UK and internationally, where panels of the public judge the public interest test. To ensure that use of data is not only secure but also being used in a trustworthy way for the public interest. The public interest test would need to be passed.
The organisation is also working internationally and coordinating with the Gates Foundation to get a global response plan in place. Morris explained:
COVID-19 is a global challenge, the UK only has 2% of the world's global health data and the virus does not respect sovereign boundaries. Last week in partnership with the Gates Foundation we launched the international COVID-19 data research alliance and it's quest is to unite global data and COVID to think locally, but act globally and use this data to combat the challenge that COVID-19 poses to us.
I think we need to think about what COVID-19 can tell us about the research landscape. Some key principles are trust, public engagement and transparency in everything we do. The UK has a great opportunity, but we've got to address the challenges of rapid data access, data linkage, avoid those silos of defragmentation by creating a ‘data-as-infrastructure' so that we can enable a comprehensive response. This will require cross-sectoral data and an absolute commitment to open science in a trustworthy way.
Openness and access
Finally, Morris was keen to make the point that Health Data Research UK wants to support the development and integrity of a trustworthy health data research ecosystem - but that this requires openness and access. Two things that the UK currently struggles with when it comes to data. He said:
The thing about an ecosystem is that it should be a level playing field and a low barrier to entry for everyone who is authorised and has a legitimate question to add. We are not there yet. And what we have seen during COVID is that people act as gatekeepers to data, which to me does not subscribe or resonate with the principles of open science. I think that's absolutely essential.