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The Information Commissioner’s Office (ICO) has called on the public to share the challenges they have faced when accessing their care records from organisations.
It has launched a survey for people who grew up in the care system in the UK and the organisations that hold their information.
The ICO recognises that records of personal information are especially important to people who have care experience, often revealing elements of their childhood history which they cannot recall.
Under data protection law, everyone has rights over their own personal information. This includes the right to ask for this information using a subject access request (SAR) but for people with care experience, this can be a lengthy and stressful process.
Last year, the ICO ran workshops with organisations that support people with experience in the care system. It said these identified that accessing care records is a significant issue with long delays, heavily redacted records and challenges accessing support. Also, organisations can struggle to understand what information they can release from complex records and often fail to treat these requests with the sensitivity they require.
Needs for support
The workshops also highlighted that the regulator could do more to help people with care experience obtain their personal information, and to support organisations to provide timely responses.
This has prompted it to launch the survey to gather information on the impact of delays, redactions and other concerns, and to identify where it can focus its support.
Catherine Evans O’Brien, head of communities at the ICO, said: “Accessing care records can be an emotive and personal subject, as the information can play a huge role in helping someone to understand their identity. As the UK data protection regulator, we want to empower people to exercise their rights over their own personal information and we want to improve the support and resources we provide to help people understand these rights.
“This survey is a major step towards improving the experience of accessing personal information for people who have been in the care system. As well as experiences trying to access records, we want to hear about any concerns people have about how their personal information has been used, so we can understand where we can make the most difference with our support.”
