Goldacre review recommends greater transparency in using health data for research

Professor Ben Goldacre’s long-awaited review into the use of health data for research and analysis has recommended building more trusted research environments (TREs) where researchers can analyse NHS patient records.

The review calls for increased transparency and the adoption of modern open working methods. The use of TREs, which are secure analytics platforms, will protect patients’ identity, and should be used for any research that poses a privacy risk to patients, unless those patients have consented to their data flowing elsewhere.

The report, Better, Broader, Safer: Using Health Data for Research and Analysis, describes  NHS data as “deeply buried treasure, that can help prevent suffering and death, around the planet, on a biblical scale.”

Goldacre, director of the University of Oxford’s Bennett Institute, was commissioned to undertake the review in February 2021 to improve care through the use of data.

NHS data, the report says, “represents an exceptional and globally important resource.” It points out that for 73 years, the NHS has collected detailed records and data on tens of millions of patients, “from a huge and ethnically diverse population.”

GP records has huge detail on treatments and diagnoses

It goes on: “Because of this diversity, analytic outputs created from NHS data can help save lives around the world. The combined GP records of the nation, as just one example, cover every person in the country; they go back many decades; and they capture some information for nearly every contact with health services, with huge detail on prescriptions, treatments, blood tests, referrals, and diagnoses.”

Local information governance rules often prevent analysts from accessing data in a timely manner, the report says. NHS analysts also found they often “struggled to access the modern computational tools they need, such as Python or R.” To address that, it recommends a more consistent approach that can be used universally: “By investing in a coherent approach to data curation, and a small number of secure platforms, the nation can unlock all the untapped potential in NHS data.”

The report makes 185 recommendations. As well as creating TREs, recommendations include adopting modern open working methods for NHS data, adopting standard methods of data curation and knowledge management and creating a single common application form for all ethics and information governance processes.

Goldacre said: “NHS data is a phenomenal resource that can revolutionise healthcare, research, and the life sciences. But data alone is not enough. We need secure, efficient platforms – and teams with skills – to unleash this potential. This will be difficult, technical work. It is inspiring to see momentum grow for better, broader, safer use of health data across so many sectors.”

Dr Peter Bloomfield, head of policy and research at Future Care Capital, welcomed the review. “The Goldacre Review highlights key opportunities for adopting higher quality health data approaches. The benefits to the NHS have been a focus of this work. There is however a critical opportunity to make use of such data to improve the quality of both health and care, as well as measure the outcomes and success across the population,” he said.