This is the third guest blog from Lord Clement-Jones on data.
The Health and Social Care Bill currently passing through Parliament potentially contains major changes to the way that our public health data will be treated with the merging of NHS Digital and NHSX with NHS England. Important amendments are needed.
All of us recognize the benefits of using health data which arises in the course of treating patients in the NHS for research that will lead to new and improved treatments for disease and for the purposes of public health and health services planning. It has in particular been of great benefit in helping to improve the treatment of COVID during the pandemic.
The introduction of Shared Care Records is a key part of this revolution. These allow staff involved in a person’s care, to access health and care records to provide better joined-up care across different parts of the health and social care system.
But increasingly the Government and, I am sad to say, agencies such as NHS Digital and NHSX seem to think that they can share patient data with private companies with barely a nod to patient consent and proper principles of data protection.
We can go back to December 2019 and the discovery by Privacy International that the Department of Health and Social Care had agreed to give free access to NHS England health data to Amazon allowing them to develop, advertise, and sell new products, applications, cloud-based services and/or distributed software.
Take the situation last year where we had what has been described as the biggest data grab in the history of the health service of GP patient data. In May, NHS Digital with minimal consultation, explanation or publicity and without publication of any data protection impact assessment (DPIA) published its plans to share patients’ primary health care data collected by GP practices giving patients just 6 weeks to opt-out.
As a result of campaigners’ efforts, including a group of Tower Hamlets GPs who refused to hand over patient data, Ministers first announced that implementation would be delayed until 1 September and then by letter to GP’s in July put the whole scheme on hold including data collection.
As a result of this bungled approach more than a million people have now opted out of NHS data-sharing.
The government have had to revise their approach and devise a simpler opt-out system and commit to the publication of a data impact assessment before data collection starts again. They have had to commit that access to GP data will only be via a Trusted Research Environment (TRE) and commit to properly thought through engagement and communications strategy.
But if we are to retain and build trust in the use of health data, we need a new governance framework.
The Government must gain society’s trust through honesty, transparency and rigorous safeguards. The individual must have the right to choose whether to share their data or not and understand how it will be used.
We need to retain NHS Digital’s statutory safe haven functions separate from NHS England and all health data must be held anonymously and accessed through an accredited data access environment, designed to cover not only the promised TRE but also where data is used for planning purposes.
The data held by the NHS must be considered as a unique source of value held for national benefit. Retaining control over our publicly generated data, particularly health data, for planning, research and innovation is vital if the UK is to maintain its position as a leading life science economy and innovator.
We need a guarantee that our health data will be used in an ethical manner, assigned its true value and used for the benefit of UK healthcare. Any proceeds from data collaborations that the Government agrees to, integral to any replacement or new trade deals, should be ring-fenced for reinvestment in the health and care system with a Sovereign Health Fund.
Those I believe are the right foundations for health data governance and, alongside other members of the Lords such Lord Hunt of Kings Heath and Baroness Cumberledge -both with enormous experience of the health service- I will be supporting and tabling amendments during the passage of the Bill to secure them.