A Nuffield Council review of the British Government’s ‘care.data’ scheme has found that the existing privacy framework needs major revision.
According to the review -- the findings of which were released earlier this week -- public participation should be at the heart of big data projects in health care and biomedical research.
The report considers issues of privacy and public interest and how developments in data science have put considerable pressure on conventional means of protecting privacy (including privacy rights, data protection and duties of confidence). It concludes that good governance that involves public participation and accountability is essential to maintain public trust.
Some of the more striking recommendations include:
- The UK Government should introduce robust penalties, including imprisonment, for the deliberate misuse of data, whether or not it results in demonstrable harm to individuals.
- There should be complete audit trails of everyone who has been given access to NHS data, and the purposes to which they have been put.
- An independent, broadly representative group of participants should be convened to develop a public statement about how data held by the Health and Social Care Information Centre (the entity that controls the use and availability of big health data from the NHS)
Cambridge University professor Martin Richards – the chair of the working party that produced the report – stressed the importance of improving the existing framework:
If we don’t get this right, we risk losing public trust in research, and ultimately missing out on the benefits this type of research can bring.”
Professor Mike Parker of the University of Oxford, another member of the committee, said: “Consent is very important. It is clearly very important that people know what their data is going to be used for.”
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