Losing public confidence is a huge risk to the NHS and to research

I have previously written on NHS England’s #care.data initiative, which will see the nation’s GP medical records uploaded to a national database that can then be accessed by research organisations, commissioners and commercial companies (for a price). The problems were as follows:

  • The public did not know about the compilation of a national database of personal medical information.
  • The process took an opt-out approach, but as no one knew about it, how could they?
  • The public have been promised access to their online GP record by 2015, but the Department of Health estimates less than 5% will be able to do so. Our records will remain secret to most of us, which means we won’t know what has been written about us, or be able to comment on its accuracy before it is uploaded to the national database.
  • Without access to our own records online, we have no access to any audit trail of those who have accessed our data.

The public were unaware of this initiative, supposed to be totally transparent, until the process was stalled last October. Along with some GPs, their Local Medical Committees and MedConfidential, we were concerned that the public knew nothing. We hosted a debate on the subject at the Party Conferences in autumn 2013 after which the uploading of data was delayed whilst a publicity campaign was put together.

Leaflets are now landing on a doormat near you. But there is no encouragement to check your records before they are uploaded; no clear guidance how to opt-out (other than ‘talk to your GP’) and questionable assurances of safety. This is uncharted territory and the governance in place is not as tight as it should be. Why isn’t data being anonymised before being uploaded? It’s not going to take a genius to triangulate personal medical data with that already held by insurers and or employers, by Tescos and or research organisations, especially if you are the only person in London SE5 with Gaucher disease or any other rare condition.

I think the potential for a national database of medical information is an enormously beneficial one, a unique opportunity due to our national health service. Delivering better care is important, no matter who is providing it. But we are being too hasty. Genuine questions of confidentiality, consent and consequences are being batted away instead of being taken seriously. This was even the subject of last week’s Nature editorial from which I quote:

Maximizing the number of people entering the programme is clearly a noble goal. But one cannot help but get the uncomfortable impression that, in their enthusiasm to amass these data, the authorities are using sleight of hand and paying lip service to the principles of informed consent. Inconvenient as it may be, and even if it has some negative effects on the utility of the database, the opt-out option to care.data should be prominently displayed, and facilitated.

Commercial gain from patient data has a historic precedent, but so has the exclusion of the same patients from personal benefit, as chronicled in The Immortal Life of Henrietta Lacks. It is vital that we address all these concerns properly. It is not an overstatement to say that we risk both public confidence in the future of the NHS, and an unprecedented opportunity for genuine medical research if we don’t get this right.

 

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About Julia Manning

Julia Manning is a social entrepreneur, writer, campaigner and commentator. She is based in London and is the founder and Director of 2020health, an independent, social enterprise Think Tank whose aim is to Make Health Personal and Social. 2020health has through research, events and campaigning influenced opinion and action in fields as diverse as bioethics, alcohol, emerging technologies, fraud, education, consumer technology and vaccination. Since 2016, 2020health has increasingly focused on digital health and public health in the community. Julia is now also a part-time PhD student at the UCL Interaction Centre, studying the use of digital health tools for stress in the workplace. Julia studied visual science at City University and became a member of the College of Optometrists in 1991. Her career has included being a visiting lecturer at City University, a visiting clinician at the Royal Free Hospital, working with south London Primary Care Trusts and as a Director of the UK Institute of Optometry. She specialised in diabetes (University of Warwick Certificate in Diabetic Care) and founded Julia Manning Eyecare in 2004, a home and prison visiting practice for people with mental and physical disabilities using the latest digital technology, which she sold to Healthcall (now part of Specsavers) in 2009. Her experiences of working in the NHS, policy negotiations and standing in the General Election in Bristol in 2005 led to Julia forming the 2020health think tank - to capture front-line experience for policy development - at the end of 2006. Julia has made many media appearances (BBC News, ITV, Channel 5 News, BBC 1′s The Big Questions, BBC Radio, LBC) and has taken part in debates and contributed to BBC’s Newsnight, Panorama, You and Yours and ITV’s The Week.
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