Guest blog by Dr Geoff Schrecker – coming soon: changes to patients’ data choices. Are you ready?March 29 2018
OK, I know that data and information governance is not as exciting as clinical medicine but getting it right is essential, and getting it wrong could prove very expensive. On 25 May this year the General Data Protection Regulation comes into force, and the new National Data Opt-Out goes live the same day. Practices will need to understand and be ready for these changes.
Whilst many of us are becoming familiar with sharing data with colleagues for individual care, patient data is also needed for research and planning purposes and the changes to patient data choices relate specifically to this use of their data. Practices will be aware of the current system of type 1 and type 2 opt-outs, and the confusion this can cause.
In 2016 the National Data Guardian produced a Review of Data Security, Consent and Opt-Outs which was accepted by the Department of Health. This report recommended the adoption of a simplified opt-out model which will start to be introduced from May 2018. This model will bring in a single national data opt out which patients can set for themselves to prevent their identifiable data from being used for research or planning purposes. This opt-out will not affect the use of data where they have given explicit consent, nor will it affect data being collected under a legal obligation (e.g. a court order). Any patient who has already registered a type 2 opt-out will have that converted to the new national data opt-out automatically, they will not need to take any further action. Type 1 opt-outs will remain in force at least until March 2020, at which point a further decision will be made by the Secretary of State for Health in consultation with the National Data Guardian. If a patient wishes to register for a type 1 opt-out they can still request this at least until March 2020.
One of the key requirements of the review is clear communication with patients regarding their choices and the benefits of using their data. As part of this communication NHS Digital has commissioned the RCGP Clinical Innovation and Research Centre (CIRC) to produce a toolkit and e-learning resource to support practices through these changes. The first stage will be launched at the Patient Data Choices national event on 24th May this year to coincide with the implementation of GDPR and the first phase of implementation of the new opt-out.
For those interested in learning more and influencing the development of the toolkit we are running stakeholder events in some of the regions with the next event taking place with the East Anglia faculty on 18th April in Cambridge. These events will be an opportunity for all members of the practice team to get a greater understanding of how these changes will affect them, so please bring your practice nurse and practice manager!