A new review, launched by the Government, will focus on the more-efficient and safe use of health data for research and analysis for the benefit of patients and the wider healthcare sector.
The review will complement the forthcoming Data Strategy for Health and Social Care which will set the direction for the use of data in a post-pandemic healthcare system.
The Secretary of State for Health and Social Care, Matt Hancock, has asked Dr Ben Goldacre to undertake this rapid review and report his findings in April.
There is a wealth of expertise around the country, much of it untapped, and I am excited to talk to people across health, social care and research about their experiences and concerns to help drive better, broader, safe use of health data
Hancock said: “The pandemic has demonstrated just how important health data is.
“Ensuring that researchers have secure, transparent and ethical access to health data has the potential to transform health and care and save lives.
“Ben has a wealth of experience in working with health data and I am delighted he has accepted my invitation to undertake this review. I am looking forward to working with Ben and seeing his recommendations over the coming months.”
Dr Goldacre, director of the DataLab at the Nuffield Department of Primary Care Health Sciences at University of Oxford, adds: “The UK has a phenomenal resource in its raw data, and its people.
“Our challenge is now in the final lap: we need to find safe, secure, collaborative and efficient ways to turn that raw data into insights and action, to improve patient care for all.
An essential human element of the doctor-patient relationship relies upon trust that their medical information will be handled sensitively and confidentially - and the use of third-party digital services must absolutely not erode that trust
“There is a wealth of expertise around the country, much of it untapped, and I am excited to talk to people across health, social care and research about their experiences and concerns to help drive better, broader, safe use of health data.”
The research will ask ‘how do we facilitate access to NHS data by researchers, commissioners, and innovators, while preserving patient privacy’?
It will explore what types of technical platforms and data flows are the most efficient, and safe; and how we overcome the technical and cultural barriers to achieving this goal.
In addition, Dr Goldacre will explore which current approaches have been successful and where they have struggled, how we can avoid monopolies, the expectations on the sharing of data and code, and how best to incentivise and resource practically-useful data science by the public and private sectors.
Speaking to BBH after the announcement, Dr David Brandon, clinical lead GP at Unity Healthcare, said: “It is absolutely vital that patients feel confident that their personal information is treated with complete privacy and security.
”Digital services have helped to transform patient access to general practice for the 21st Century and have allowed General Practice to continue to provide an exceptional level of service throughout the pandemic, despite all the challenges faced.
Our challenge is in the final lap: we need to find safe, secure, collaborative and efficient ways to turn that raw data into insights and action, to improve patient care for all
“However, an essential human element of the doctor-patient relationship relies upon trust that their medical information will be handled sensitively and confidentially - and the use of third-party digital services must absolutely not erode that trust.
“I would welcome transparency that can help GPs and our patients feel secure knowing how their personal data is handled."
Dr Murray Ellender, a practicing GP and chief executive of digital triage company, eConsult, adds: “I always encourage my GP colleagues to read the privacy policy before procuring a digital service, but the vast majority aren’t written in plain English and are impossible to understand.
“GPs are absolutely right to ask private health companies that are collecting information on their staff and patients for transparency on their plans to monetise it in the future.
“Keeping customers in the dark might work in Silicon Valley, but it’s antithetical to the NHS as an institution.”