Public participation should be used to drive big data projects in the healthcare industry, according to a report by the Nuffield Council on Bioethics.
But according to the research, this cannot happen without increased transparency about how the data will be collected and used.
The report mentioned several current projects that have been called into question over whether their use of data is ethical, including the NHS Care.data initiative, 100K Genomes and UK Biobank.
Martin Richards, chair of the Nuffield Council on Bioethics Working Party and emeritus professor of family research at the University of Cambridge, said that as it becomes cheaper and easier to collect data, health services are collecting it from a number of different places, such as GP records, laboratory tests and even health-based applications.
“There is a strong public interest in the responsible use of data to generate knowledge, drive innovation and improve health. However, people understandably have concerns about their privacy. 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,” he said.
Lack of transparency was Care.data’s downfall, and in early 2014 the scheme was delayed by six months to “allow more time to build understanding of the benefits of using the information, what safeguards are in place and how people can opt out”, according to an NHS spokesperson.
The Nuffield report said the plans for Care.data to extract patient data and pass it on to the Health and Social Care Information Centre (HSCIC) highlighted the differences between the privacy expectations of patients and legal requirements of the HSCIC.
“It highlighted the absence of governance arrangements to negotiate this difference, and raised questions about how the rights of individuals were respected. Failure to attend to these prospectively led to ad hoc policy changes and a damaging loss of public and professional trust,” the report said.
More on Care.data
In the latter part of 2014, the project faced further delays due to concerns over lack of publicity and clarity of the proposed programme, despite ongoing positive support from patients.
As the use of healthcare data grows, it is no longer just the concern of the Human Rights Act, but also the Data Protection Act, leading to changes in governance such as the recent update that allows the Information Commissioner’s Office (ICO) to force audits on NHS authorities.
But despite challenges, the project has pushed forward, and in October last year the scheme finally entered testing with four clinical commissioning groups (CCGs).
According to the report, public concerns should be addressed and any data project should release a statement on how data will be used, collected and accessed, as well as who it will be available to.
“Data is increasingly seen as a commodity to exploit and there are often strong political, economic or scientific interests that try to set the terms of a data project prior to any wider public debate,” said Susan Wallace, member of the Nuffield Council on Bioethics Working Party and lecturer of population and public health sciences at the University of Leicester.
“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.”