Data sharing review puts focus on challenges surrounding use of patient information for healthcare research
New technologies are capturing more data about us than ever before, and there is great interest in using this information, not least for health. A new Science Museum exhibition looks at this big data revolution and as part of its display shows how genomic data can make a real difference to patient care. However, for the benefits of big data to be realised in the NHS, the public needs to be reassured that it is protected and used appropriately.
Earlier this month, a review from the National Data Guardian Dame Fiona Caldicott into data sharing in health and social care was published. It was seen as an opportunity to ‘improve the use of data in people’s interests’. Building trust in how the NHS looks after personal confidential data underpins the report’s recommendations, which include new data security standards, a method for testing compliance against these standards, and tougher sanctions for malicious data breaches.
Dame Fiona also put forward a new consent / opt-out model to give people a clear choice about how their information is being used beyond their direct care. There would, however, continue to be exceptions from the proposed opt-out for anonymised information, or in situations where there is a legal duty to share information, such as about dangerous infectious disease threats.
In compiling her review, the National Data Guardian worked closely with health professionals, research organisations and charities, but stressed that a full and comprehensive conversation with the public on the value of sharing health data is also needed.
Genomic data sharing
Genomics is an important area where data sharing, with the right safeguards in place, is crucial to inform and improve the care of current and future patients. Dame Fiona’s review touches on the somewhat blurred interface between direct and secondary care for genomic data, and highlights useful work already carried out on the issues in this area, citing a recent joint report by the PHG Foundation and the Association for Clinical Genetic Science.
As much remains to be learned about the human genome in health and disease, it is not always clear whether a particular genetic variant identified in a patient is likely to be associated with their disease or not. Sharing data allows experts to gather the evidence needed to make those links. A useful animation from Genomics England explains why being able to share and compare genomic and clinical data not only helps professionals to make clearer, more reliable diagnoses and choose more appropriate interventions, but also supports researchers in understanding links between genetics and disease, and developing new treatments.
Data in 100,000 Genomes project
In the 100,000 Genomes Project, an explicit consent model is used for data sharing; participants understand and agree that their de-identified data will be accessed by approved medical researchers from both the public and private sectors, whilst remaining securely behind an NHS firewall.
This world-leading initiative is just the beginning of a future where more and more people will have their genomes sequenced. Sharing this genomic data and associated health data can improve understanding of disease and unlock new and more personalised treatments – but needs public understanding of these benefits and reassurance that data will be used appropriately, securely and transparently.