With Care.data pilots planned in several parts of England, we’ve published ten principles to help give consumers confidence.
In 2014, after a quarter of the local Healthwatch network raised concerns over NHS England’s attempts to explain the care.data programme, the programme was paused.
Care.data aims to make better use of patient information to improve care in the future. However, consumers reported to us that they felt unable to make an informed decision about whether to opt out of the programme.
After consulting with stakeholders, the programme is now planning ‘pathfinder’ projects in four areas of England. The projects will test the clarity of the patient communications materials and the effectiveness of the data extraction process.
Our research indicates that many adults would be happy to donate their personal health data to help research if it was anonymous. We believe guaranteeing anonymity and control are key to giving consumers confidence.
To help we have developed ten principles to collecting and sharing personal health and care data.
Local Healthwatch in the pathfinder areas will be working to ensure that members of the public can make an informed decision on whether to opt-out of sharing their data.
Last November, the Government appointed Dame Fiona Caldicott as National Data Guardian. The Government made clear that no data will be extracted from GP practices as part of the care.data programme until Dame Fiona has advised the Secretary of State for Health that she is satisfied with the proposals and safeguards.