‘Missteps’ have resulted in 3 million people opting out of their data being used for healthcare purposes, Prof Ben Goldacre said at a Westminster Health Forum on the use of patient data.
Prof Goldacre who wrote a 2022 government-commissioned report into how the efficient and safe use of health data for research and analysis can benefit patients and the healthcare sector, said that missing out on data has a significant impact because of its value.
‘It’s how we find which drugs work. It’s how we spot side effects. It’s how we identify problems in hospitals and surgeons with room to improve. It’s how we plan services and optimise care,’ said Prof Goldacre.
He said that weak privacy management was ‘the fundamental problem’ in the care.data programme and General Practice Data for Planning and Research (GPDPR), both NHS England initiatives for capturing data from GP surgeries.
‘I’m often disappointed when I hear people say that the problem with care.data and GPDPR was that we didn’t do good enough comms. There may have been a failure of communication. But the fundamental problem with both of those projects, in my view, was that the privacy management was not sufficiently well developed prior to launch,’ said Prof Goldacre at the virtual event on May 22.
He explained: ‘Both of those projects were built around the principle that we would extract data, take the names and addresses off and disseminate it to a wide number of users. That’s not a very good privacy offer.’
As a result, he said many people opted out of national data and GP data.
‘As a consequence, overall current estimates are that more than 3 million people opted out of their data that are being used. That’s a real tragedy and a real illustration of how irreversible it is every time we have a misstep by any of us in this space.’
It highlighted the need to avoid any mistakes with data in the future, said Prof Goldacre.
‘It’s really important that none of us makes any missteps. Because if one of us makes a misstep, then all of us suffer from the consequences of that.’
He said that GP data offered a huge opportunity because of the breadth of coverage and depth of information. It can be used to do huge amounts of research, monitoring the clinical outcomes and clinical activities across different settings in the NHS.
Prof Goldacre is one of the leads of OpenSAFELY, an analytics platform which delivers research across 58 million patients’ health records.
OpenSAFELY is a collaboration between the Bennett Institute for Applied Data Science at the University of Oxford, the EHR group at London School of Hygiene and Tropical Medicine, and others.
