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The coronavirus (COVID-19) pandemic has forced us to confront weaknesses and strengths in our society and health and social care systems. The disproportionate toll taken on those receiving and providing social care, or from black, Asian and other minority ethnic communities, has brought existing inequalities into sharp focus. It also demonstrates that we need data that allows us to take action at a local level.

We founded the Networked Data Lab last October to bring together a collaborative network of analysts, to accelerate open analytics, patient and public involvement, and the use of linked data across the UK.

In tackling COVID-19 information is key

The challenges of the COVID-19 crisis have brought out the armchair epidemiologists and virologists, with much discussion of data flows, data sharing agreements, and meta-data in the daily press for the first time in my memory. What has been made clear is that high-quality, comprehensive and transparently-shared data and information are key to solving our most complex health and care issues. And that we need data that can be used by both local and national decision makers.

Three things we’ve learned

Since October 2019, the Networked Data Lab programme team has been working to select local health and care system partners from across the UK. This has given us a window on those working on the front line with data to improve health in their communities. We’ve drawn three main lessons from this:

  1. There are many examples of excellence across the UK. We received a high number of applications from every country in the UK. Of these, eight had linked data across health and social care, and more were in the process of creating fully integrated local datasets. Often this innovation doesn’t receive the same attention as the large national datasets, but the depth of insight that can be gained from following a patient across the health and social care system can’t be underestimated. Given the capability and acceleration of innovation across the country, we made the decision to invest further and immediately increase the number of Networked Data Lab partners from three to five.
  2. Data is the first step, but relationships and collaborations are key. From the applications we have learned that where linked data is being used most effectively, data teams formed strong relationships with their local health and care system leaders. Collaborative working has often been a key to success – sharing code and knowledge about data governance has allowed areas to accelerate innovation, involving the public and patients in how data is used and what analyses are conducted. This has made their work more acceptable to their communities. Meanwhile working across organisations that span the traditional boundaries of health and social care has allowed data to be brought together that builds a richer picture of a community.
  3. Where linked data is available, it’s become crucial to the COVID-19 response. The partners who have joined the Network Data Lab are all using linked data to advise and shape the response of their health and social care systems to COVID-19. Linked data has been used to identify shielded patients, and also those who might be additionally vulnerable through isolation or deprivation. Rapid data analysis has been used to map where care home workers need protective equipment, and where bed capacity is restricted. These insights, and the data and expertise behind them, have allowed local system leaders to better understand the changing picture on the ground and target their response.  

Next steps

Over the next few months, we’ll be ramping up analysis across the Networked Data Lab partners. We’ll be sharing code and outputs from analysis of all the partners as we go – working openly so everyone can benefit. We’ve already started to engage with patients and the public to help guide the most important topics for us to address and what sorts of questions we should be asking.

The COVID-19 crisis will remain with us for a long time and bring to the fore other health and care issues. This will include the experiences of the shielded population, the impact of the pandemic on mental health and delays in access to care. From the start, we knew we wanted the lab to use linked data to address health inequalities and the needs of the most vulnerable – giving local and national decision makers the information they need to act. That’s never been more relevant.

As well as informing decisions in the partners’ communities, by bringing the analysis together from across the UK we’ll be able to build a national picture. This will allow national and local leaders to understand how best to take action against the daunting challenges in the months and years ahead.

Sarah Deeny (@SarahDeeny) is Assistant Director of Data Analytics at the Health Foundation.

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