A recent Ernst & Young (EY) report presents a framework for the efficient and ethical use of NHS data, which it describes as "a treasure trove of information detailing health, wellness, illness and the associated care pathways."
According to their estimates, genomic data currently held by the NHS could generate £5 billion each year and provide healthcare benefits worth £4.6 billion to patients.
The report is optimistic about the possible benefits of using NHS data for every stakeholder in the healthcare ecosystem. There is immense potential to streamline and personalise patient care, facilitate innovation in the pharmaceutical industry and cut operational costs for the NHS, according to the report.
WHY IT MATTERS
The NHS currently holds medical data for 55 million lives from birth to death, making its records the largest health-related data asset in the world today. If harnessed responsibly, this data could revolutionise the way the healthcare industry responds to patient needs while also generating substantial revenues for the notoriously overstretched NHS.
According to EY, the privacy of patients is best protected in secure, specialised environments with pre-existing data analysis infrastructure. It is thus "most sensible" for the NHS to collaborate with private companies as it will allow elbow room for this mammoth transition while keeping setup and running costs as low as possible. Though this is an exciting proposition for health tech companies, NHS patients’ protected rights to their data and their distrust of data sharing are crucial factors to consider.
EY asserts that only aggregated, trend-level data is needed for medical research and that NHS users’ data will be anonymised if it is ever shared.
THE LARGER TREND
In response to a rapidly growing interest in the use of patient data in the healthcare industry, the Department of Health and Social Care (DHSC) introduced a 10-point code of conduct earlier this year for technology companies that may access NHS data.
Smaller scale datasets collected both privately and publicly have already been shared with scientists to facilitate medical research. The 100,000 Genomes Project is one such initiative by the UK government, which began in 2012 and will be releasing its findings to the NHS over the course of 2019.
ON THE RECORD
Joanna Holbrook, professor of bioinformatics and VP of Transnational Medicine at BenevolentAI, said to Forbes, “As a discovery company attempting to make medicines stratified for precisely defined patient populations, we would be keen to use our cutting-edge analytical tools on rich longitudinal data that the NHS holds. We need to do this in a way that is careful of patient privacy and respectful of individual autonomy; we want to work with the NHS and other UK institutions to enable research in a way that benefits everyone. The UK has huge strengths in academic sciences and initiatives such as UK Biobank, Genomics England and UK health informatics that are world-leading. The opportunities for synergy are huge with our single-payer health system and vibrant biotech industry.”