It’s taken a pandemic to bring the UK’s health data community together
27 November 2020 | Author: Caroline Cake
We live in the era of Big Data, so it’s no surprise that data has been a big part of the response to the COVID-19 pandemic. There are graphs, charts and data dashboards everywhere you look, and we’ve seen an explosion of public interest about how health data is being gathered and analysed to tell the story of COVID-19.
It has been a privilege to witness at close hand how the UK’s health data research community has risen to the challenge, come together and made significant progress in understanding this new virus and its impact on health and society.
We’ve seen unprecedented progress in terms of ensuring timely and secure access to vital datasets, setting up large-scale research projects in a matter of weeks and building new systems to cope with new data being generated through the pandemic.
Opportunities for health data research
One of the biggest opportunities is timely access to data for research, ideally as near to real-time as possible. For example, during the pandemic we have needed to rapidly identify people suitable for clinical trials for new treatments within hours of receiving a positive coronavirus test result.
Linking different types of data together in secure environments is also key. By linking GP records, test results and clinical outcome data together, researchers can study the effectiveness of different interventions, so that better actions can be taken to save lives. These insights are just as important for other diseases beyond the current COVID-19 pandemic.
Smart use of health data has facilitated one of the most significant discoveries during the pandemic. The RECOVERY clinical trial, supported by the NHS Digitrials the Health Data Research Hub for Clinical Trials, showed that a readily available steroid, Dexamethasone, cuts the risk of death by a third for patients on ventilators and by a fifth for those on oxygen.
The RECOVERY researchers used data accessed from existing sources including GP and hospital records to minimise the amount of information that overstretched clinical teams needed to collect about each patient, keeping everything as simple and straightforward as possible.
Health data research at scale
Another opportunity is achieving scale across the four nations: Wales, England, Scotland and Northern Ireland. Health data that is gathered from within the NHS and private healthcare providers is currently fragmented across the four nations of the UK.
By creating Trusted Research Environments – computing platforms for secure data storage and access – we can create federated approaches that enable data analysis in a trustworthy way from all these different sources.
This approach relies on good data collection systems. While some hospitals have well-integrated electronic health records, others are still working with a plethora of digital and even paper-based systems.
It is challenging in social care where we don’t yet have a reliable way of knowing who is living in a care home setting, let alone data on how their needs, circumstances and care use may be changing. And it is also important where new capabilities and services are being established, for example for COVID-19 testing and vaccinations, to ensure that the right data is being collected from the start.
Enabling all these information systems to ‘talk’ to each other and having nationally agreed datasets and common data standards could enable more effective responses to possible future outbreaks or research into other disease areas.
Ensuring the quality of health datasets will also allow us to benefit from advances in machine learning and AI, opening up opportunities for research and innovation on an unprecedented scale.
All of us together
The biggest opportunity of all comes through using health data research to make an impact in preventing, diagnosing and treating disease for everyone and doing this in a way that includes everyone.
At Health Data Research UK, we’re working to support access to more inclusive data that is representative of the whole population, covering diversity in ethnicity, gender, socioeconomic status, disability and health conditions. Doing so will reduce inequalities by avoiding the development of health technologies that only work for certain groups, countries or diseases – a situation known as health data poverty.
Diverse health data research requires a diverse workforce with a wide range of skills and experiences. As part of our commitment to diversity and inclusion in health data science, we are proud to partner with the #10,000 Black Interns scheme, offering 30 paid internships for young Black people across organisations within the UK Health Data Research Alliance next summer.
We are also mindful that health data research can only move forward with the consent, involvement and engagement of patients and the public. We are working to listen, hear, acknowledge and address public concerns around data privacy, access and consent.
Public trust requires transparency over how health data is used, ensuring that it is never being used for unethical ends or to discriminate. We encourage an ongoing dialogue aimed at securing enthusiastic, ongoing consent, so that everyone knows what their health data is being used for and how it is benefiting not only themselves but everyone in society.
Timely and trustworthy access to linked health, social and care data has underpinned the UK’s response to the COVID-19 pandemic. Let’s use what we’ve learned together during this year to bring forward a new era of data, systems and processes that will transform healthcare for all diseases, for all of us.
The Health Data Research UK Alliance Symposium “All of us together” takes place on Tuesday 1st December with a series of high profile talks and panels.
The event will review the role health data science has played this year and look forward to how the sector continues to work together to improve the health of the nation and save lives.
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