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Shadow ministers have called on the government to ensure they hold a public consultation on the findings of a review into the safe and effective use of health data for research.
In February 2021, health secretary Matt Hancock announced that Ben Goldacre, the director of the DataLab at Nuffield Department of Primary Care Health Sciences at the University of Oxford, would lead a review into a range of issues relating to the use of health data.
The review will set the direction for data use in the NHS after Covid-19, and Goldacre is due to produce a report on the findings shortly.
Shadow digital minister Chi Onwurah and shadow health minister Justin Madders have written to Hancock, asking to ensure the public is informed and able to share their views on the recommendations from the consultation.
In the letter, the shadow ministers said that they understood Hancock wanted the review to be “rapid” and complement the government’s data strategy for health and social care, but that “the NHS needs the public’s trust in order to operate and be effective” and “meaningful consultation is the only way to retain the public trust on which our collective public health depends”.
“We therefore invite you to confirm a proper, substantive public consultation will take place following the Goldacre Review on any proposals that you draw from his findings,” the letter said.
Goldacre is looking at a range of issues relating to the use of health data, including how to facilitate access while also preserving patient privacy, as well as how to overcome the technical and cultural barriers to achieving it.
The review is also looking at how issues such as data quality and “the completeness and harmonisation across the system” affect the range of ways research can be used across health and social care, and how data quality issues can be resolved. It also includes how to incentivise and resource “useful data science” by both public and private sectors.
Shadow digital minister Chi Onwurah said a consultation was key to ensuring public trust. “Labour wants to see people put back in charge of their own data and consulting the public over the Goldacre Review’s findings will ensure that everybody gets a say,” she said.
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