Key Facts

• Amendments 117 to 121 are being discussed.
• The amendments cover all healthcare provided by public bodies or independent sector providers.
• Clause 79 amends the Health and Social Care Act 2012.
• The clause strengthens wording from 'should' to 'must have regard to' and 'comply with'.
• There is a waiver power for organisations that cannot meet published information standards.
• Officials will consider requests for waivers very carefully before granting them.
• Amendment 109 aims to improve integration in health and care services.
• The General Practice Data for Planning and Research programme has faced issues due to lack of transparency and public misunderstanding.
• A Which? survey found that 55% of people had heard of the data collection scheme, with 71% feeling the NHS did not publicise it well.
• Headlines from multiple newspapers report thousands of people opting out of sharing their medical records.
• Similar issues arose eight years ago when the government attempted to implement the same programme, which failed.
• NHSX director Simon Madden stated that building public trust in health data use is vitally important.
• The public does not differentiate between various processes related to health data and considers them as one whole.
• The clause discusses anonymised data for performance standards.
• Pseudonymised data can be triangulated with other sources to identify individuals.
• Public trust was damaged by the care.data scandal seven years ago.
• Alex Norris tabled amendment 109.
• Edward Argar addressed concerns about data sharing under anonymised conditions.
• The Bill aims to enable health and care organisations to access anonymous data for their functions.
• Clause 80 inserts a new section into the Health and Social Care Act 2012 to increase anonymous data sharing.
• The clause applies only to information in a form that does not identify any individual or enable their identity to be ascertained.
• Regulations will introduce exceptions, including considerations for minimizing provider burden and protecting commercially sensitive information.
• Clause amends the Health and Social Care Act 2012.
• NHS Digital must balance duties related to effective planning and provision of health services with privacy considerations.
• NHS Digital's powers are clarified for secure, safe, and responsible sharing of data for healthcare purposes.
• Rehabilitation and reablement services are currently not part of regulated adult social care activities.
• These services carry a level of risk similar to other adult social care interventions.
• Vision rehabilitation has seen long wait times, with some individuals waiting since 2018.
• Clause 84 addresses the enforcement of duties against private providers.
• The discussion revolves around ensuring compliance with regulations in adult social care.
• The aim is to maintain high-quality provision and manage risks effectively.
• Amendment 65 would allow specified people and organizations to provide pseudonymized information.
• Amendment 64 permits Scottish Ministers to exempt providers in Scotland from participating in registries or medical devices information systems.
• Amendments 61, 62 restrict the disclosure of information for commercial use only for public health analysis purposes.
• Amendments require consent from Scottish, Welsh, and Northern Ireland Ministers before exercising certain powers under the clause.
• Data handling powers given to the Health and Social Care Information Centre.
• Concerns over lack of consultation with devolved nations like Scotland regarding the Bill's provisions.
• Amendments relate to form of data, disclosure to third parties, and territorial extent changes.
• Amendments 65 and 66 aim to protect individuals' data while allowing necessary research.
• Devolution should allow local knowledge but maintain collective standards on data usage across the UK.
• There is widespread concern about government relationships with commercial entities and misuse of health data.
• Discussions with Scottish Government officials about the Bill's clauses have been ongoing since the beginning of the year.
• Humza Yousaf, Cabinet Secretary for Health and Social Care in Scotland, has expressed willingness to cooperate.
• Clause 85 gives powers to follow an appropriate approach on data collection and disclosure after consultations with stakeholders.
• The amendment would apply only to medicine information systems but does not affect the medical devices information system as it was already addressed by the Medicines and Medical Devices Act 2021.
• Clause 85 amends the Medicines and Medical Devices Act 2021.
• The clause introduces a power to establish medicines information systems by NHS Digital.
• These systems aim to enhance patient safety through post-market surveillance of medicines.