The UK government has launched a project to investigate citizen knowledge and attitudes about health and social care data sharing.
The project is co-funded by the National Data Guardian for Health and Care, Understanding Patient Data and the Sciencewise programme. The idea is to consider the outcomes of the investigations in guidance that considers “a wide range of data sharing scenarios”.
According to the National Data Guardian for health and adult social care, Fiona Caldicott, planning for this had started “long before the outbreak of the Coronavirus Covid-19 pandemic, so it’s not a reaction to it”.
“However, we are already thinking about how the knowledge and attitudes of our public participants may have been affected,” she said in an article published on 14 April 2020.
Caldicott then went on to explain that the NHS and social care services hold a lot of information about individuals that can be used for a number of purposes, including identify patterns and develop new ways to predict, diagnose or treat illness.
However, she noted these organisations don’t always have the expertise to do so and that collaboration can be enabled by sharing data, citing he government’s efforts to encourage data-driven research and innovation. “Organisations which hold health and care data already assess public benefit or interest when deciding whether to allow it to be used to develop new medicines and technologies,” she said.
“But 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,” said Caldicott.
Questions to be asked include how to deal with situations where use of data might benefit only certain groups, or if the data used won’t benefit the patient n question or their families, but people in other countries and many years down the line.
The dialogue process, which will explore public attitudes towards these practices and investigate which benefits count as “good enough” to make use of data acceptable, is being designed and managed by facilitation specialists Hopkins Van Mil, following a mini competition run by Sciencewise.
The workshops will take place in the autumn 2020 in Reading, Stockport, Great Yarmouth and Plymouth. A report will be published in spring 2021 with the findings, which will be used by the National Data Guardian and Understanding Patient Data to develop public benefit guidance. A workshop will be held that spring with the original workshop participants to test if the guidance meets their expectations.
An independent oversight group will be formed to follow the process of development of the new materials and there will be an independent project evaluator.
Data is not flowing safely across the NHS for “legitimate sharing” for aims including research, according to the Tech Plan released earlier this year by the digital unit of the health service, NHSX.
According to NHSX, this is due to lack of interoperability and complex guidance on information governance.