The effective use of patient data is of critical importance to improving healthcare delivery, service design and medical research in the NHS. Your story (PM plans patient data grab in proposals for seven-day NHS, 22 July) highlights the critical need for clearly defined and robust governance processes to give patients confidence that their data is being respected. We are concerned that this incident, as reported, suggests that vital lessons from the care.data fiasco have not yet been learned.
The Department of Health, the NHS and the HSCIC must ensure there are transparent and proportionate procedures in place to safeguard data and control access. There must be absolute clarity about how data can be accessed, by whom and for what purposes. While risks to privacy can never be entirely eliminated, they must be effectively reduced and managed.
Above all, patients, public and healthcare professionals must understand and trust the system. Building that trust is fundamental. We believe information from patient records has huge potential to save and improve lives but privacy concerns must be taken seriously. The stakes are too high to risk any further mistakes.
Olivia Belle Director of external affairs, Arthritis Research UK
Aisling Burnand Chief executive, Association of Medical Research Charities
Mike Hobday Policy director, British Heart Foundation
Alastair Kent OBE Director, Genetic Alliance UK
Nicola Perrin Head of policy, Wellcome Trust
