Hopefully - now that 40 million UK citizens have signed up for the NHS App - which allows them to see part of their digital lifelong GP records - more citizens will understand and wish for continuation of a national digital record solution. For clinical care, research and planning and administration of transactions as seen during the response to covid 19.
There is still work to do on Data Saves Lives: Reshaping Health and Social Care With Data for Children as described in this article in the same edition of the BMJ.; Editorials
Data sharing measures in the Health and Care Bill exclude children
BMJ 2022; 377 doi: https://doi.org/10.1136/bmj-2022-071227 (Published 20 May 2022)
Cite this as: BMJ 2022;377:e071227
"After much lobbying by members of the Children and Young People’s Health Policy Influencing Group - which includes over 70 voluntary orgaanisations representing the voices of children and young people - the government has acknowledged the speecific challenges associated with sharing children’s health and social care data. These include ethical considerations such as consent, data access, storage, and management. The government will present plans to improve data sharing to parliament within the next year.11 Professionals working with children and young people must use this time to strengthen and amplify the case for key amendments to the Health and Care Bill to ensure that data for children and young people are shared effectively and safely, to deliver much needed improvement in health outcomes.
"A legislative duty is required within the bill to ensure that agencies such as local authorities share relevant data with children and young people’s health teams through appropriate data linkage. Concerns surrounding confidentiality and misunderstanding about what information can be shared have been shown to be a barrier to effective data sharing.12 National guidance from government is required to ensure that staff in integrated care systems have adequate training on the legal, technical, and regulatory aspects of linking children’s health and social care data. The new duties that empower the secretary of state to maintain data standards should also extend to data for children and young people.
"Children and young people have a right to be involved in matters about them,13 and guidance is required for integrated care boards to listen to the voices of children and young people, and, where appropriate, their parents and carers, on data sharing between health and social care. All materials used to explain data sharing and consent should be produced in full partnership with children and young people."
HIFA profile: Richard Fitton is a retired family doctor - GP. Professional interests: Health literacy, patient partnership of trust and implementation of healthcare with professionals, family and public involvement in the prevention of modern lifestyle diseases, patients using access to professional records to overcome confidentiality barriers to care, patients as part of the policing of the use of their patient data
Email address: richardpeterfitton7 AT gmail.com