Freeing up patient information for research
The governance of health data in research is complex and there’s confusion about the lawful uses of data across health and social care. This contributes to both breaches in data confidentiality and a lack of data being used to advance research.
University of Sheffield research has formed the basis for NHS guidance on the use of health data in research and data-driven technologies in the health and social care system.
The problem: stifled treatments and innovations
At some point in our lives most of us will be a patient in the NHS. Whether we’re in for a broken finger, treatment for a long term illness, or to give birth, data is collected, so we need to be confident that data is held safely. But at the same time, the type of care and drugs we receive has been developed by research, which heavily relies on access to patient data. That poses the question, how do we safely balance our need for privacy, with the need to advance medical treatments?
The rules on data protection are partly informed by the common law, a body of law created by judges and stated in written opinions therefore creating precedents for future cases. However, this approach to health data left gaps in understanding of how confidential information can be used.
“This creates huge amounts of uncertainty in the sector in relation to when we can disclose patient information. This then either leads to breaches of confidentiality or stifles potential innovation in terms of treatments because researchers can’t access the data that's needed,” explains Dr Vicky Chico, a University of Sheffield researcher.
Vicky’s research has been directly impacting policies relating to the use of healthcare data for research and has influenced NHS guidance on this.
Our solution: Policy and guideline changes
Access to data is a key aspect of research. It’s necessary to make informed decisions from further analysis and study, and it allows researchers to stay on top of trends and provide solutions to problems.
Through her research Vicky has shown that the law does not provide the full picture of how and when patient data can be shared without breaching confidentiality legislation. Her work provides clarity on the legal position which has been directly relied on in drawing common policy lines and providing guidance nationally.
One way of meeting the requirements of data protection legislation is to gain consent to the use of patient data. Vicky’s research has been critical in informing the development of these consent models within the NHS.
Vicky’s work feeds into policy development and practice across health and social care organisations. In particular, the work has informed NHS Digital decisions on sharing anonymised data outside of the NHS. As the national security centre for NHS patients, NHS digital can now share anonymised data where there is a public benefit, for example, where it might improve medical treatments.
As Vicky informs us, “There are very few members of the public who never become a patient of the NHS so this research has the potential to impact on everybody in the UK because everybody that ever engages with the NHS has data on NHS Digital. We’re making sure that not only can this data be used to inform research and therefore treatments, but that it can be used in a way that means the public has trust, so there are clear limits on how data can be used for public good.”
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