latest health care news

03.02.15

Experts call for ‘greater transparency’ in big data projects

Public participation should be at “the heart” of big data projects in healthcare and biomedical research, according to experts. 

Recent health data projects, such as care.data, 100K Genomes and UK Biobank, have raised a number of ethical questions surrounding the use of data. 

And the report by the Nuffield Council on Bioethics calls for “greater transparency” about how people’s data are used, and recommends the introduction of criminal penalties for “data misuse”. 

Professor Martin Richards, chair of the Nuffield Council on Bioethics Working Party and Emeritus Professor of Family Research at the University of Cambridge, said: “We now generate more health and biological data than ever before. This includes GP records, laboratory tests, clinical trials and health apps, and it is becoming easier and cheaper to collect, store and analyse this data.” 

He added that there is a “strong public interest” in the responsible use of data to generate knowledge, drive innovation and improve health. 

However, Prof Richards said people understandably have concerns about their privacy, and the health sector risks losing public trust in research if it is not done right. 

Among a number of recommendations, the report says that health authorities should track how data are used; that people should be told if and when there have been breaches of data security; and recommends the introduction of robust penalties, including imprisonment, for the deliberate misuse of data, whether or not it results in harm to individuals. 

In addition, the experts claim that any data project should produce a “clear, public statement” about how data will be used, who will have access to it, and should continue to report on how it has, in fact, been used. 

Dr Susan Wallace, a member of the Nuffield Council on Bioethics Working Party and Lecturer of Population and Public Health Sciences, University of Leicester, said: “We say that any data project should first take steps to find out how people expect their data to be used and engage with those expectations through a process of continued participation and review.” 

The report calls for the government to make “enforceable provisions” to ensure that privacy breaches involving individual-level data that occur in health services and biomedical research projects are reported in a timely and appropriate fashion to the individual or individuals affected. 

On top of this, the Health and Social Care Information Centre should maintain “prospective assessments” to inform the most effective methods for preventing the inadvertent or fraudulent accessing of personal healthcare data by unauthorised individuals. 

Recently it was revealed that thousands of requests to opt out of the health service’s system of sharing medical records was ignored as NHS officials have admitted that not sharing data would affect patient care.

NHS guidelines released last year said that patients could, without affecting their care, “object to any information containing data that identifies you from leaving the secure environment … this includes information from all places you receive NHS care, such as hospitals”. 

To view the latest report, click here.

Tell us what you think – have your say below or email opinion@nationalhealthexecutive.com 

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