By Aisling Burnand

Published: 12 July 2017

Today the Government published its response to the National Data Guardian for Health and Care Review of Data Security, Consent and Opt-outs.  

I can’t overstate the transformative potential of patient data to advance medical research and improve patient care. Effective and responsible use can enable the causes of diseases and ill-health to be identified and new treatments developed. Joining up patient data across the NHS can deliver safer and more effective care and services for patients. 

Failure to record, link and share data in the NHS is jeopardising the care and safety of patients as well as our ability to conduct world-class research. Progress on creating a truly digital and 21st century NHS has been far too slow and patient care and research has suffered as a result of this. Examples are all too common. One of AMRC’s members, Asthma UK, has shared the particularly powerful case of 13 year old Tamara Mills who died from an asthma attack in 2015 despite seeing GPs and attending hospital 47 times in the four years leading up to her death. Each time she saw healthcare professionals, they treated the immediate problem as an isolated event and did not link up her multiple appointments and admissions. 

Of course, sharing and joining- up of data must be within a system in which the public is well-informed about how their data are collected, stored, linked and shared. Concerns about privacy and data security are legitimate and must be taken seriously and addressed effectively. 

In their response, the Government have accepted all of the National Data Guardian’s recommendations and have set out an ambitious implementation plan. They must now take action to deliver on commitments on data security and informed choice. Further delays must be avoided as they will only serve to harm the care of patients. 

There’s no argument that there are complexities and challenges in making the use of patient data a reality but, by working with technology and engaging stakeholders I believe these complexities can be effectively managed by Government and ultimately overcome. 

Charities are key stakeholders and are already addressing how to make the case for the responsible use of patient data to the public. Last year we published a patient data booklet - A matter of life and death: how your health information can make a difference – that demonstrates the power of health information for research. We also support the work of Understanding Patient Data to provide the resources to hold better conversations around data.

Not only is using data in the interests of patients, but it is what patients want. The Wellcome Trust’s Monitor survey found that almost four in five people surveyed (77%) would be willing to allow their medical records to be used in a research study if they were anonymised. In 2011 AMRC polled almost 1000 people and found that 72% wanted to be offered opportunities to be involved in trials of new medicines or treatments if they suffered from a health condition that affects their day-to-day life. Results from the UK Collaborative Trial of Ovarian Cancer Screening are even more convincing; of 1.2 million UK women contacted to take part in the trial, only 32 complained they had been contacted. That’s 32 out of 1,200,000; figures like that are hard to ignore.

At a time of uncertainty for UK plc and amidst increasing financial pressure on the NHS, harnessing the potential of patient data has the power to become the UK’s USP. The Life Sciences Industrial Strategy has the potential to ensure that there is the optimal environment for data to contribute to innovative, transformative partnerships between the NHS and the life sciences sector for maximum patient benefit.  We must bring the public with us as Dame Fiona Caldicott said in her review: “a key aspect of this work must be a dialogue with the public.”

Data saves lives. It’s as simple as that. While realisation of this may be complex, it is something that we can and must get right. I hope that the publication of the Government’s response today is the first step on this journey. There is much work to do.