“Access to information is not the same as data being accessible”: Hft responds to the National Data Guardian consultation

Posted On: 
22nd March 2019

Hft, a charity supporting adults with learning disabilities, has responded to a consultation by the National Data Guardian for Health and Social Care by calling for information to be consistently provided in accessible formats.

The National Data Guardian for Health and Social Care seeks to ensure that an individual’s health and care information is securely safeguarded and used appropriately. Dame Fiona Caldicott was appointed as the first holder of the statutory office of National Data Guardian for Health and Social Care on 11th March 2019.

The consultation sought views on what the role’s priorities should be. Hft called for a consistent approach to the accessible formats available for the health and care data for people with learning disabilities. The charity also called for guidance around how to explain ‘reasonable expectations’ for those with reduced mental capacity, and greater transparency around the way local authorities commission care packages. 

Billy Davis, Public Affairs and Policy Manager at Hft, said: “The use of data in social care can be used to help enhance the high-quality, person-centred support that adults with learning disabilities deserve. However, more needs to be done to ensure that information on what data is collected, and how it is used, is made available in formats that are accessible to them.

“Access to information is not the same as data being accessible. It is essential when providing information to a person with a learning disability regarding the data held about them, and how it is being used, that it is provided in a format that is accessible to them, such as Easy Read. The person can then be as informed as anyone else, regarding access to the data held about them, and actively involved in how data is used to inform the care they receive.

“We welcome Dame Fiona Caldicott’s appointment as National Data Guardian for Health and Social Care and we look forward to working with her to ensure that adults with learning disabilities have full and equal access to their health and care information in formats that are accessible to them.”