By Kyle Main, Policy Officer, AMRC

Published: 5 February 2018

I always feel that the beginning of a New Year offers the perfect opportunity to evaluate goals, look ahead, and of course set the traditional New Year’s Resolutions. I have been contemplating the patient data policy landscape, after what was an extremely important year for data in the UK in 2017.

2017 Milestones included the launch of the Life Sciences Industrial Strategy (containing a number of recommendations to maximise the use of data), Government accepting the recommendations of the National Data Guardian’s review, and the introduction of a new Bill governing data protection laws. Collectively, these will have wide-ranging effects on the data environment in the UK, particularly for data used in healthcare and research. In this blog I’ll look ahead and highlight some key aspects of patient data policy that AMRC will be focusing on in 2018.

Demonstrating the power of data to save and improve lives

The transformative potential of patient data to advance medical research and improve patient care cannot be understated. The responsible use of patient data has helped progress our understanding of disease and ill-health in many different ways. Examples from medical research charities include a study using data from the UK Renal Registry and hospitals which found a pattern of hospitalisation amongst kidney patients that led to new recommendations for clinical practice; and in cystic fibrosis a registry of patient data led to the development of essential new treatments.

AMRC has, for many years, championed the improved linkage and use of patient data in the health service. We are encouraging and supporting our members to discuss the use of data in their research with patients and the public, for instance, by sharing case studies. This is something we will be continuing to champion over the next year.

Working closely with Understanding Patient Data, we are helping to share and disseminate their resources which are aimed at helping researchers, healthcare professionals, and charities to hold better informed conversations about patient data. Understanding Patient Data is also developing some exciting animations to clearly outline how patient data is used by healthcare professionals and researchers.  

Bringing forward the Life Sciences Industrial Strategy recommendations

The Life Sciences Industrial Strategy, which was launched last year, made a number of recommendations for the UK to lead in the responsible use of patient data. AMRC was a member of the Life Sciences Industrial Strategy Board and supported, alongside others, the inclusion of a number of key recommendations on data. These include: building further disease-specific data registries that are aligned with charities; ensuring data in the NHS is interoperable and can be joined-up across the country; and, crucially that the Government implements the National Data Guardian’s recommendations on data security and consent. AMRC will continue to work with the Office for Life Sciences, NHS Digital, and our member charities to ensure that charities can benefit as some of these recommendations are hopefully brought forward over the coming year.   

A new national data opt-out

Since last August, AMRC have been working as members of an Advisory Group set up to assist Government as they develop and implement a new national opt-out for health data. This was a key recommendation in the National Data Guardian’s review of data security, consent and opt-outs. The new national opt-out is due to be launched in May. We were pleased this has been delayed coinciding with the introduction of the General Data Protection Regulation (GDPR). Building a system that is trusted by the public is essential, and to ensure this, the opt-out must be carefully communicated and make clear the choice that patients have. AMRC will continue to seek to influence in this area for our members. This will hopefully guarantee a system that works for both patients and researchers.

New data protection laws

The Government’s new Data Protection Bill, which brings the EU’s General Data Protection Regulation (GDPR) into UK law, must ensure that the UK can continue to be a nation that supports ground-breaking research which involves the processing of personal data.

We will be following the Bill as it progresses through parliament to ensure that it supports the essential research conducted by medical research charities. The Bill is shortly due to undergo its second reading in the House of Commons.

Laying the foundations for the future

At a time of uncertainty for the UK and amidst increasing financial pressure on the NHS, taking forward the recommendations in the Life Sciences Industrial Strategy on patient data while simultaneously developing a trusted system for sharing and using patient data is of the utmost importance. Ultimately this could help to ensure the UK remains a world leader in the life sciences and, vitally, improve care for patients. To realise this potential, there are significant new developments to watch out for this year, which AMRC will be helping to influence, to ensure that 2018 doesn’t disappoint!