General Practioners Data Trust
Overview
The General Practice Data Trust pilot aims to explore how to give back control of their data to people who have opted out of NHS Digital’s General Practice Data for Planning and Research (GPDPR) programme and provide an opportunity to participate in life saving research.
About
Answering the questions at the core of this pilot project will mean that any resulting General Practice Data Trust can achieve the overarching impacts of reassuring those who have currently opted out of the GPDPR that their health data will only be shared in accordance with their wishes; and reassuring researchers that the data set they are accessing is full, accurate and has been provided consensually.
Aims & Objectives
The GPDT aims to solves the fundamental problem that currently the GPDPR is incomplete due to the significant opt-out rate of over a million citizens concerned about how their data will be managed and used in it. As a result of this opt-out, a significant risk of bias has been introduced to the GPDPR which could render research invalid and lead to suboptimal, or even wrong, health planning and policy decisions.
The GPDT pilot project explores how to provides a mechanism to minimise this bias by empowering citizens who have opted out to choose to share their data according to the terms settled on in the Trust.
