People who draw on care and support and family and friend carers have co-produced a set of 15 key principles and 6 actions around the collection, storage, sharing, and use of data in England. We have published these in a report titled ‘Data for people’.
The government has made improving data in care a core part of its programme for reform. With this in mind, we identified a need to develop a position on care data – one that starts from the perspectives of people with lived experience.
The report emphasises the need for ongoing co-production with people who draw on care and support and family and friend carers in discussions about care data. It also highlights important themes such as equity and inclusion, and trust and transparency.
The report will be used to inform the Department of Health and Social Care’s approach to data. We also hope it sparks further discussions and drives ongoing efforts for better data practices across the whole of care and support.
Ian McCreath, Director of TLAP, says:
“People who draw on care and support have valid concerns about how their data is collected, stored, shared and used. These are often driven by negative experiences, such as data being inaccurate, data being recorded in insensitive or inappropriate language, or physical records being lost. People also told us about data not being shared appropriately across health and care providers, leading to a lack of joined up care. All of this makes it difficult for people to get what they need to live their life their way. The principles and actions in this report show us how we can start to change this situation for the better.”
Download the report from our Resource Library.
