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.

 

About Julia Manning

Julia is a social pioneer, writer and campaigner. She studied visual science at City University and became a member of the College of Optometrists in 1991, later specialising in visual impairment and diabetes. During her career in optometry, she lectured at City University, was a visiting clinician at the Royal Free Hospital and worked with Primary Care Trusts. She ran a domiciliary practice across south London and was a Director of the UK Institute of Optometry. Julia formed 20/20Health in 2006. Becoming an expert in digital health solutions, she led on the NHS–USA Veterans’ Health Digital Health Exchange Programme and was co-founder of the Health Tech and You Awards with Axa PPP and the Design Museum. Her research interests are now in harnessing digital to improve personal health, and she is a PhD candidate in Human Computer Interaction (HCI) at UCL. She is also dedicated to creating a sustainable Whole School Wellbeing Community model for schools that builds relationships, discovers assets and develops life skills. She is a member of the Royal Society of Medicine’s Digital Health Council. Julia has shared 2020health's research widely in the media (BBC News, ITV, Channel 5 News, BBC 1′s The Big Questions & Victoria Derbyshire, BBC Radio 4 Today, PM and Woman's Hour, 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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