Professor John Williams, Director of the RCP’s Health Informatics Unit (HIU), said:
The Royal College of Physicians welcomes this report from the Patients Association and APPG on Patient and Public Involvement in Health and Social Care. The RCP agrees that more effort needs to be put into communicating the benefits of effective record keeping and sharing of patient information.
The RCP also strongly argues that consent for participation in the Care.data scheme must be ‘presumed’ so that patients have to actively ‘opt-out’ should they not wish any of their data to be shared. An ‘opt in’ approach based on active consent would render the scheme inoperable as this is likely to result in a low participation rate, which in turn will yield insufficient data to be able to draw meaningful conclusions that will bring benefits to future patients.