Worth the wait – The Goldacre review

This week the long-awaited Goldacre Review into the use of health data for research and analysis was published.

Professor Ben Goldacre’s report, aptly titled “Better, broader, safer”, neatly breaks down the opportunity, challenges, barriers, and potential solutions needed to harness NHS health data to drive forward a new era of life sciences research.  

Whilst progress has been made in recent years to improve the quality and accessibility of UK data assets, it hasn’t yet been at the scale or speed needed to truly transform the lives of patients. Ultimately, that is the shared aim of the government, the NHS and researchers across industry and academia – to transform lives through cutting edge, data-enabled research. 

Building on Professor Goldacre’s recommendations

You only need to look at the acknowledgements section (which makes up 9 full pages of the 221-page review) to appreciate the breadth of opinion and expertise in the Health Data ecosystem. The review team has left no stone unturned in delivering their findings. But the breadth of these contributions also goes to show how vital cross-system collaboration will be in making progress. 

So, what can industry bring to the table?

One key area that Professor Goldacre’s review calls out is the need to improve the education and careers of health data analysts in the NHS. Industry has a wealth of experience in attracting, cultivating, and retraining high-quality data analysts.

There is expertise that can be tapped into and knowledge that can, and should, be shared, whether through secondment, training opportunities, or sharing of resources. This is the kind of joint working we need to explore.  

Secondly, we need to talk more openly about how and why health data is used. It is vital that industry actively contributes and doesn’t shy away from this important public dialogue.

It’s why at the ABPI we recently launched a public consultation on industry principles for the use of health data, and why we are developing new resources for researchers and the public to see how data is used and accessed securely (watch this space).

We need to work with the NHS, the public, patient groups and other researchers to better understand their views and concerns, and openly communicate with them.

The Goldacre Review rightly describes the outstanding raw data in the NHS, but also the scale of the challenge in curating, managing, cleaning, and preparing this data so it is useable in well designed and secure platforms.

Work is needed on how this raw data quality will be measured and improved, to ensure we deliver progress and patient benefits as soon as possible. We should bring together the significant expertise that exists across the research sector to support the NHS and the government in tackling this challenge.

The pharmaceutical industry can play a major role in supporting the introduction of Reproducible Analytical Pipelines (RAPs) that deliver on NHS and industry aims. This could include a RAP for curating data and assessing the real-world performance of new medicines – including those recommended for use in the Cancer Drugs Fund and the upcoming Innovative Medicines Fund, as well as established treatments.

It could also include a RAP for the curation of priority clinical datasets, linked for example to genomic testing, via the Genomics Medicines Service. Or even a RAP for combining international data with NHS data to better understand rare diseases. The opportunities are wide-ranging and limited only by how willing we are to work collaboratively.

While progress has been made in recent years to improve the quality and accessibility of UK data assets, it hasn’t yet been at the scale or speed needed to truly transform the lives of patients.

Continued effort is needed, and guidance to improve the quality of generating and reporting Real World Evidence (RWE), such as that set out in NICE’s RWE Framework (currently in development), is very welcome.

These are just a few opportunities we’ve already gleaned from this important report. And the reality is there are many more areas for collaboration, some of which are already ongoing, such as work with the HDRUK Hubs and Our Future Health.

We look forward to the publication of the Government’s Data Saves Lives Strategy, which will respond to the Goldacre Review’s recommendations – and to increased working across sectors to drive progress in this vital area.

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