Message to the SoS: Personal Health Records not a paperless NHS needs to be the focus

By 7.30am this morning various doctors had already taken to the twitter airways bemoaning the latest health headline: Jeremy Hunt wants the NHS to be paperless by 2018. We will all know why – echoes of the National Programme for IT (Connecting for Health, CfH) reverberate – with memories of the failed initiative still fresh and painful.

Granted the Secretary of State this time isn’t imposing a national template, but we must learn from the past. The NHS IT plan fell at the first hurdle both because it was sold as an IT project and because it was too complex. The vision, the potential, the passion were all lost because the focus was on IT. So the new focus on the NHS being ‘paperless’ will also fail if the emphasis is placed on this means, rather than the ends: a system that enables patients to control their clinical records.

And please note – it needs to be patients not professionals controlling records – because the phrthumbother reason CfH failed was because it prompted mass anxiety and opting-out with the knowledge that 300,000 NHS staff would be able to access your medical records. Patients in control (on which we published last autumn “Personal Healthcare Records: Putting patients in control?”) means it will be the patient who gives permission for their electronic records to be viewed. The software is already out there, enabling secure, accurate access to GP, hospital, dental and other records, all viewable by the patient with the ability to interact, add in your personal details e.g. pharmacy and optician visits (not change the clinical record) and access condition based information. A system which allows professionals to share information – and unfortunately this is the language used in the DH press release – without the patient’s knowledge is not acceptable. A paperless system will flow from this, but the PHR must be the focus.

We urge the SoS not to lose the confidence of the public or professionals by promising the impossible. The NHS will not – cannot – be paperless by 2018. Have you SEEN the average hospital medical records department? Even the Department for Health has projected an uptake rate of just 5% of electronic records by 2015 for GP records online, and our report suggested that significant work is needed in terms of infrastructure and cultural changes to reach even this modest goal.

The barriers to uptake will be around culture and change more than technology. There are many reports of doctors not wanting patients to access their records – only last year I walked out of a King’s College Hospital when the Consultant refused to share my clinical records with me . This is a HUGE challenge to historical professional control and status. We’ve had the right to see our records for about 20 years but professionals still write unintelligibly and resist requests to view them. This attitude has to change. Jeremy Hunt does get it: healthcare is unsustainable if we are not empowered with the information to look after ourselves better, and electronic efficiencies are not adopted. The evidence on electronic records points towards an increase in patient knowledge, communication and satisfaction. This will produce the savings – by reducing demand, enabling self-care and improving efficiency – but the focus must remain on patients, not paper.

By the way, if you live in London, you can find out more about accessing your record online this weekend at an event being run by the London Health Improvement Board.

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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