Response to NHS Digital’s announcement to introduce and decision to defer GPDPR

We proudly host Discover-NOW, the health data research hub for real world evidence, and believe fundamentally in health data being used responsibly for research into treating and preventing disease. Working as one of seven HDUK data hubs there are phenomenal examples of the vital role health data can have in finding treatments and saving lives.

Support, confidence and trust of our communities

However, we know that these benefits are only possible if we have the support, confidence and trust of our communities. We are committed to engaging patients and the public in meaningful trustworthy ways. Which is why is we welcome NHS Digital’s decision to defer the collection of GP data for Planning and Research in England from 1 July to 1 September 2021 “to provide more time to speak with patients, doctors, health charities and others to strengthen the plan”.

Opportunity

This is an important opportunity for a national programme such as GPDPR to scale work that has been taking place locally to build a transparent, informed and authentic dialogue about health data. It is a chance to drive honest, frank conversations and to embrace the complexities and issues raised. This is crucial to building and maintaining trust.

OneLondon Citizen’s Summit, is one such example, which brought together 100 Londoners in a four-day deliberative event, where public participants formed a set of recommendations and conditions for using data for multiple purposes, including planning and research.

These recommendations are the foundation for everything we do at Discover-NOW and have led us to conduct our own series of mini deliberations in NWL to further explore issues around data access and value. We want to ensure our Hub policies align to the expectations set out by our citizens and crucially increase trust through demonstrating the impact of their recommendations. In fact, meaningful public engagement has been a key success criteria from our funder HDR UK when assessing the progress that we and other hubs across the country have made.

Supportive of data sharing

Through this local evidence we know that the public is incredibly supportive of data sharing if engaged in a genuine, timely and authentic way, giving them the opportunity to shape how data sharing happens. We also appreciate there are many challenging issues in this area and it is only through working in partnership with the public will it allow us to both move faster and further, and together realise the countless benefits of health and care data for research.

For more information about GPDPR visit: www.digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research