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National brain tumour research funding needs to increase to £30-35 million a year

Research charities voice concern at GP data programme

Brain Tumour Research, alongside 19 other research charities, was signatory to a letter sent by the Association of Medical Research Charities (AMRC) to NHS Digital. The letter outlines concerns and key asks for implementing the GP Data for Planning and Research (GPDPR) programme.

The GPDPR programme has been developed by NHS Digital as a new way to collect data held in the GP medical records of patients. NHS Digital has used a service called the General Practice Extraction Service (GPES) to collect patient data for more than 10 years. The new programme will reduce burden on GP practices, allowing doctors and other staff to focus on patient care.

The letter reflects the concerns detailed in a longer statement that highlights charities’ support for the use of GP data for research, but urges NHS Digital to communicate proactively, transparently and responsively to ensure public trust in the programme. It specifically calls for more clarity about the choices available for people to opt-out, the commercial access to data, and the proposal to introduce Trusted Research Environments.

Nicola Perrin, AMRC’s Director of Policy and Public Affairs, said: “The GPDPR programme holds enormous potential for medical research, but NHS Digital must engage carefully to get it right. Charities stand ready to advocate for responsible uses of patient data, but only once they have confidence in the safeguards and engagement that underpin this programme.”

The statement can be accessed here.

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