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ABHI at 30 Guest Blogs. Harnessing the Power of Data

In spite of its recent challenges, the NHS has remained the envy of the world. But if it wants to sustain this reputation for another 70 years, the NHS must show that it can harness modern technologies to improve healthcare and realise the enormous benefits these innovations can bring to patients. Examples of such advances were abundant in the Science and Technology Committee’s recent inquiry into genomics and genome editing in the NHS. We heard about the potential for genomic medicine to provide diagnoses to patients with rare diseases who could otherwise face years of uncertainty; to tailor treatments so that adverse reactions are avoided, and the most effective medications chosen; and to facilitate the discovery of transformational new drugs. We are on a trajectory that might, one day, make certain genetic diseases such as cystic fibrosis ‘curable’ – a prospect which seemed unthinkable just a few years ago.

However, it’s no secret that we have been too slow to adapt to this revolution in healthcare. Funding constraints and the sluggish progress in developing the NHS’ digital infrastructure are well-known, and were both prominent themes throughout the Committee’s inquiry. As a single national healthcare system, the NHS collects data on a scale that is unrivalled. Harnessing the power of this data is critical to enabling the adoption of genomic medicine and improving patient care, while it could also facilitate more innovative and flexible pricing schemes, such as outcomes-based pricing, to get cutting-edge treatments to patients as quickly as possible while ensuring that the financial risk is shared more fairly between the NHS and industry.

The Government must invest in the infrastructure needed to capitalise on these opportunities. Genomics England and the NHS must also be ambitious in recognising the potential for anonymised data to support the development of new treatments, in partnership with research institutes and industry, while ensuring that appropriate consent and data security safeguards are in place.

Our ability to achieve these benefits will depend heavily on public support. Care.data, NHS England’s much-maligned data-sharing initiative, failed to win the public’s trust and was ultimately shelved. New technologies will raise other ethical dilemmas, particularly when it comes to genome editing. Which conditions would it be appropriate to ‘edit away’, and what would that mean for people who are already living with that condition? We need to get beyond tropes of ‘designer babies’ and sensibly debate the ethical implications of new technologies – informed by expert opinion but fully engaging with the public.

It is concerning that, with the Genomics Medicine Service due to roll out across NHS England this October, a recent survey of the general public conducted by the Wellcome Sanger Institute found that 82% had either never heard of the term ‘genomics’ or had little understanding of it. This presents a headache and a wake-up call for policymakers, who cannot expect the public to have confidence in something without first being clear about its benefits.

The role of Government in supporting technological advances in the NHS is clear. We have had some notable successes in recent years – including the 100,000 Genomes Project and Parliament’s landmark vote to change the law on mitochondrial donation – but there can be no room for complacency. With more revolutionary technologies on the horizon, we must continue to support their development and deployment so that patients can enjoy the highest standards of care in a world-leading 21st century health service.

Rt Hon Norman Lamb MP