Do we really need to wait for the government’s data proposals?

In a feature for Digital Health, Marc Farr, chief analytical officer at East Kent Hospitals University NHS Foundation Trust and co-founder of Open Data Saves Lives (ODSL), explores why we must be brave when it comes to data.

There is no doubt we are tackling an unprecedented elective care backlog. A predicted NHS waiting list of more than 13 million people as a result of the Covid-19 pandemic means we must change the way we are working and quickly.

The solutions don’t need to be difficult. Some are already available and already being put into practice. I have written and talked about how linking data sets from different parts of the NHS can help us run NHS hospitals, GP practices and community services more effectively by providing greater insight into where care and support is most needed.

The government’s Covid-19 Collection of Patient Information (COPI) notice allowed us to access, link, store and analyse data in a way we have never been able to before. It has resulted in faster access to data and resulted in more collaborative working across health and care organisations in local areas. By transforming the speed at which analysts, managers and clinicians are able to discover valuable insights into their local populations, it is enabling forecasting and modelling that can help to predict demand and make the best use of resources.

Safe sharing of data can lead to greater innovation and expedite improvement

Data sharing now seems to be top of mind for this government with the publication of its policy paper ‘Data Saves Lives’. However, we believe there needs to be a greater emphasis on using the web to communicate, share and innovate together, helping us make more impact on health outcomes, faster.

By being brave it is already possible to find shortcuts to data sharing without riding roughshod over information governance. For example, the increase of domestic abuse during lockdown has quite rightly attracted a lot of news coverage over the last year. Through a brave approach to information governance, we’ve created research links between the police and the NHS to identify families at risk and support them.

The aim of ODSL is to become a catalyst for collaboration and ensure data-led action by sharing code and learning. This approach makes it possible to model what is happening in local communities in order to predict and relieve pressure on our hospitals. For example, we have been involved with a project to share Covid-19 Pillar 2 testing data across the local health system in Kent.

Testing data is collected by Public Health England and stored by NHS Digital. Data warehousing is outsourced to commissioning support units. However, and IT systems, information governance, and processes can make it difficult for ED staff to access this data quickly and easily, particularly when working under pressure. The Covid-19 Control of Patient Information notice, permitting NHS Digital to disseminate confidential patient data to organisations during the pandemic, unfortunately doesn’t remove the logistical barriers that have long been an obstacle to efficient information sharing in the NHS.

East Kent Hospitals NHS Foundation Trust worked with its local council partner to implement a valuable solution that facilitates the secure transfer of data from Public Health England to the NHS, providing an overnight flow of testing data. As a result the hospital is now provided with Pillar 2 and other local acute laboratory data daily.

As well as sharing Covid-19 test results daily across the region it has also been possible to stream people in emergency departments, immediately reducing the risks of patients contracting Covid-19  while in hospital.

Working with what we already have to make vital changes right away

Big change can and has been made by wider thinking about how data can safely be used. Mental Health is a particular area where change and improvement is vital. Having a deeper understanding of the system is essential to enable improved policy and programme development.

ODSL is working alongside NHS Digital on a new project to map the availability of mental health data across the UK.

By understanding what data exists we can help NHS Digital on a pathway to becoming radically open, leading to opportunities to provide improved access to care and support.

We also want to understand the blockers and enablers to the better, broader and safe use of mental health data for research, analysis, policy and programme development.

The future for data use is exciting and it doesn’t have to be difficult. We know we can build databases that are just as good, if not better than the ones the government is working on without having to spend millions of pounds or the need for complex IT infrastructures.

Rather than collecting and disseminating data by CCG we have been building by local area, so that people can get a real understanding of the situation that is most relevant to them, making decisions based on local level data that they can understand. So let’s not waste time setting out our good intentions when we have so much we can do right now.