This consultation seeks views on the proposed health data security standards and the consent/opt-outs model. We would like to hear from health and care professionals and organisations and the public.
The consultation follows an independent review of data security and consent by National Data Guardian Dame Fiona Caldicott.
The review includes:
- 10 new data security standards
- a method of testing compliance with these standards
- a new consent model for data sharing in health and social care
Foreword:
Sharing the right information with the right people at the right time is essential to the delivery of high quality healthcare, whether in making an accurate diagnosis or in ensuring that test results are communicated and acted upon swiftly, or in making sure that the right social care package is in place to support someone to stay in their own home for longer. As all healthcare systems go digital, it is vital for:
- individual diagnosis and treatment
- system safety and performance, and
- in research, to improve treatment and care for patients.
Whilst there is a big difference between a patients individual personal medical record and anonymous large-scale historic data sets (e.g. what % of the patients on a particular drug developed side effects over the last 10yrs), which patients understand, patients will rightly want to know that we are putting in place appropriate systems and safeguards to regulate different levels of consent, prevent inappropriate access to or use of information.
As health and social care organisations become increasingly paperless and digital, the opportunities to use data for the benefit of patients and the wider public increase significantly. It is also the case that a greater reliance on digital technology means that more robust data protection is needed to ensure patient trust and confidence and that these responsibilities must be taken seriously by the system and its staff. This is why, last September, we asked both the Care Quality Commission and Dame Fiona Caldicott, the National Data Guardian for Health and Care, to review data security across health and care. We also asked Dame Fiona to propose a number of new data security standards to be applied in all NHS and social care organisations, and to set out options for a new consent/opt-out model for data sharing, so that people clearly understand the choices available to them about how their personal confidential information will be used.
We warmly welcome the recommendations made in both the CQC and National Data Guardian’s reports and are grateful for the input that many interested professional bodies, health and care organisations, stakeholders and members of the public have given.
In her report, Dame Fiona strongly recommends that the Government should consult the public on both the data security standards, and her proposals for a new consent/opt-out model, and we are pleased to take forward that recommendation in this document. We look forward to hearing your views about how we can build a more trusted and secure approach to the way in which health and care data is used, shared and protected.
