There is lots of buzz around ‘open data’ in health and what it means for post-pandemic recovery. It is evident that all of us working within and on the fringes of health need to change the way we are working, fast. Sharing datasets, code and promoting data-driven research has the potential to improve health systems and patient care. This is particularly timely given the fact that 13 million people are currently awaiting NHS operations and procedures following the impact of COVID on patient care.
You may have noticed the NHS getting behind data sharing as part of its COVID recovery strategy, recently committing to a new ‘Data Saves Lives’ policy. This is welcome. However, at OpenDataSavesLives, 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, quicker.
One example of why the web is a critical part of open data sharing is that it transforms the speed at which analysts, managers, and clinicians are able to discover valuable insights about their local populations, which means they can forecast and model demand predictions and make the best use of available resources. This is just one way that health improvements can be expediated. Of course, there are countless more.
My colleague at Open Data Saves Lives, Marc Farr once told me that by being brave we can find shortcuts without tripping up over the issues of information governance, and he’s right. 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, Marc’s team created research links between the police and the NHS to identify families at risk and support them. None of this would have been possible without linking datasets.
The aim of Open Data Saves Lives is to become a catalyst for collaboration and ensure data-led action by sharing code and learning. For example, we have been involved with a project to share COVID-19 testing data across the local health system in Kent, ultimately leading to the secure transfer of data from Public Health England to the NHS. This process has meant the region has been able to stream people in emergency departments by covid status, immediately reducing the risks of patients contracting COVID-19 while in hospital.
Big change can, and has, been made by wider consideration about how data can safely be used. Mental Health is an example of this. The negative mental health effects of COVID-19 are far-reaching and link with exposure to loss, stress, and trauma, but also reflect systemic issues. Using data to create a deeper understanding of the system is essential to enable improved policy and programme development.
In Leeds, we are working alongside NHS Digital on a new project to map the availability of mental health data across the UK, helping them become radically open. By sharing data in the open we are helping the NHS to better understand the issues and resources connected with mental health provision which will ultimately facilitate improved access to care and support for people accessing services within the post-pandemic world.
The future for data use is exciting and it doesn’t have to be difficult. At OpenDataSavesLives we are bringing together people from across the UK to share, innovate and collaborate. Our new type of institution is #RadicallyOpen, with a mission to build and create real impact, focused on sharing data and innovation to #SaveLivesNotData. To carry our #RadicallyOpen ambition forward we are planning a one-day Unconference as part of Leeds Digital Festival that will bring together people from across health and care to share data, learning and innovation around key issues related to post-pandemic healthcare.
