A government organisation that provides guidance on the processing of health and adult social care data says it is launching a major new public consultation.
This will assess public attitudes towards the use and dissemination of healthcare data to researchers and scientists in public and — critically — private companies.
The consultation comes amid pressure from some policy makers to “realise more value” tied up in restricted public data sets, including those of the NHS.
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Created in 2014, the NGD is an independent body providing public oversight of how confidential health and care information is used.
Following the 2018 Health and Social Care Act, the agency has statutory powers to issue official guidance on the use of such data.
In an open letter this week, current National Data Guardian for Health and Social Care Fiona Caldicott stressed her current concern that, as demand for access to this data grows, “more detailed guidance on how to make such judgements will help to ensure that decision making is consistent, and that the public can be confident that their data is being used in the public interest.”
To better craft its guidance, the NGD has launched a project that will assess and gauge the public’s views on the benefits and disadvantages of using health data for research.
In its announcement, the organisation stressed the project is not a reaction to the current coronavirus crisis, noting its planning began long before the virus emerged.
Moving forward, the NGD plans to establish public dialogue workshops in the autumn of 2020. These will take place in Reading, Stockport, Great Yarmouth and Plymouth. An oversight board will be formed to include not just stakeholders but the views of patients who will be affected by any new data policies. The research and findings will be revealed in report due to be released in the spring of 2021.
So What’s the Data Worth?
A report last year from Ernst & Young estimated that the 55 million patient records held by the NHS alone could be worth as much as £5 billion per year. While altogether a proper ‘realisation’ of its benefits could be worth £9.6 billion per annum.
The Information Commissioner’s Office meanwhile ruled London’s Royal Free Hospital breached the Data Protection Act in 2017 after handing over the personal data 1.6 million patients to Google’s AI subsidiary Deepmind.
While last year it was reported that NHS patient data was sold to a number of international pharmaceutical companies such as Merck Sharp and Dohme, Eli Lilly and Bristol-Myers Squibb.
It must be noted that NHS data is not just one easily accessible and sold dataset.
The Ernst & Young report was highly critical of the nature of the NHS digital ecosystem stating: “In the ideal world, every patient would have a single EHR (electronic health record), all records would be digital and centrally housed, and all health care platforms and data sets would be standardised and interoperable. But in reality, the NHS health care data ecosystem is made up of multiple fragmented and geographically dispersed data silos. Each data set contains multiple data types and formats.”