Care.data: Lessons learned about transparency and public engagement
In the winter of 2014, a media story raised public concern about the potential for commercial interests to purchase a dataset containing patient-level records from the HSCIC. Concerns that were raised centred on the transparency of the care.data initiative. Particularly, there was criticism about the adequacy of public consultation and public communication about the initiative and questions raised about the safeguards to protect privacy and to ensure data uses would be in the public interest.
Prior to the media story, NHS England, with the HSCIC, had undertaken a public awareness raising campaign about the care.data initiative by sending a leaflet to all households to explain the data they have and how it is being used and the benefits of data use and the protections of information privacy. The leaflet explained that individuals may opt-out of national data repositories. There was also a You-tube video that was included on the NHS website conveying the same messages. For fiscal reasons, there was no advertising budget for the campaign.
After the media story, the initiative was put on hold for six months to raise awareness, listen and act on the views of patients and key stakeholders, and to discuss both the benefits and risks involved (NHS, 2015). Issues for public discussion include ensuring the public are aware of the initiative, have a clear understanding of the issues and understand their right to opt-out of data repositories.
The legislative framework for health information governance was also strengthened. The Care Act was introduced in May 2014. This legislation restricts the sharing and analysis of personal health data to uses that have a public benefit to health or social care or to health promotion. The law also strengthens data governance by requiring the Health Research Authority to establish an independent body to advise the Secretary of State, the Health Research Authority and the Health and Social Care Information Centre regarding the processing or sharing of personal health data.
There will be a pilot phase of care.data where a small number of GP practices will submit patient data to the health and social care information centre in order to pilot test ways of supporting GPs to ensure patients are informed of the purposes of this data sharing, its safeguards and how they can object/opt out. The Independent Information Governance Oversight Panel (IIGOP), chaired by Dame Fiona Caldicott, will also advise the HSCIC on the first phase of implementation of care.data.
