Abstract
With one million people treated every 36 hours, routinely collected UK National Health Service (NHS) health data has huge potential for medical research. Advances in data acquisition from electronic patient records (EPRs) means such data are increasingly digital and can be anonymised for research purposes. NHS England’s care.data initiative recently sought to increase the amount and availability of such data. However, controversy and uncertainty following the care.data public awareness campaign led to a delay in rollout, indicating that the success of EPR data for medical research may be threatened by a loss of patient and public trust. The sharing of sensitive health care data can only be done through maintaining such trust in a constantly evolving ethicolegal and political landscape. We propose that a dynamic consent model, whereby patients can electronically control consent through time and receive information about the uses of their data, provides a transparent, flexible, and user-friendly means to maintain public trust. This could leverage the huge potential of the EPR for medical research and, ultimately, patient and societal benefit.
Highlights
The UK National Health Service (NHS) provides health care for over sixty million citizens throughout their lives
Around one million people are treated every 36 hours [1], with vast amounts of information about patients’ treatment and outcomes collected in their medical records. These “cradle to grave” records are increasingly captured within electronic patient record (EPR) systems rather than on paper
Much research has been possible in England through initiatives such as the Clinical Practice Research Datalink (CPRD), The Health Improvement Network, and QResearch, whereby researchers can access anonymized primary care EPR datasets [3]
Summary
The UK National Health Service (NHS) provides health care for over sixty million citizens throughout their lives. Around one million people are treated every 36 hours [1], with vast amounts of information about patients’ treatment and outcomes collected in their medical records These “cradle to grave” records are increasingly captured within electronic patient record (EPR) systems rather than on paper. The United Kingdom has national EPR coverage in primary care, and coverage in secondary care (hospital) is increasing While these records are primarily for health care delivery, such data have huge potential for medical research as well. Perception by the public that their personal health care data are being used inappropriately, either shared with organizations such as insurance companies or being sold for profit, leads to distrust. This loss has been exemplified by adverse public reaction to NHS England’s care.data program [7]
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