Patient information governance is an increasingly important topic because of the urgent need to share and integrate patient data to improve care, power research, empower individual patients, and in England to commission care. Dame Fiona Caldicott led an independent panel of experts which reviewed patient information governance practice in the English NHS. The objective of the final report “Information: To share or not to share”, known colloquially as Caldicott2 and published at the end of April 2013, was to “to ensure that there is an appropriate balance between the protection of the patient or user’s information, and the use and sharing of such information to improve care.” This paper makes extensive use of ‘Fair Shares for All’, a review of patient information governance prepared by the BCS Primary Healthcare Group for BCS Health in 2011-12.
Whilst the BCS, Chartered Institute for IT  welcomes the report’s recommendations , there are issues which we believe need to be addressed.
BCS calls for:
- a greater role for patients in information governance
- increased use of privacy enhancing technologies to avoid the need to disclose identifiable data for secondary purposes outside its origins without consent, unless it is essential for the intended purpose
- tighter and more transparent governance for safe havens that store identifiable individual patient data
- ultimately, more granular dissent options for patients to minimise the impact of patient dissent on data availability
- a single body involving all stakeholders to generate policy and guidance on, and to monitor the practice of, NHS patient information governance.
While these recommendations are generally applicable, we are particularly concerned here with their relevance to England where the Health and Social Care Act 2012 has significantly reduced the legal protection afforded to patient data. Before looking at our concerns in more detail, we define a few important terms and summarise the evolution of patient information governance in the NHS.
Date of publication: October 2013