Who Sees What?

Exploring public views on personal electronic health records

Developing a joined up system of electronic patient records (EPRs) presents the NHS with significant new opportunities for improving treatment, healthcare management and medical research.

Electronic systems which store health records on local or national databases promise to make patient records available instantly whenever and wherever they are needed; to provide a wealth of new management information; and to facilitate new ways of conducting observational epidemiological research and recruiting participants for clinical trials, making possible some projects which would previously not have been feasible.

Realising these benefits, however, involves a fundamental shift in the way that patient records are kept and used. It means making sensitive information about patients available more widely and storing them in systems which have been criticised by some security experts. While many developed countries are rolling out these systems, the NHS’s unrivalled reach and scope makes its development of EPR both especially challenging and especially potentially rewarding.

The Wellcome Trust’s decision to fund nef (the new economics foundation) and the Centre for Science Education at Sheffield Hallam University to undertake a mass public engagement exercise on this topic was timely and important. Over the past two years nef has engaged with 6000 people across England and uncovered a picture of how they understand the Health Service’s obligation to safeguard their privacy which differs uncomfortably from current practice. We hope that our findings will encourage the Health Service to work towards a new social contract’ which permits the use of personal data for projects of public benefit, while ensuring that public trust in medical confidentiality is not jeopardised.



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