In all the many important discussions about data security in the context of the Care.data project, other concerns, such as the marketisation of the research agenda and the resulting influence over which public health issues are highlighted, are often ignored. Outside the NHS, care.data will also be made available to think tanks, universities, charities, and private companies, as if they were all equivalent entities with equivalent motivations. Dr. Geraint Lewis, NHS England’s Chief Data Officer, said that “we think it would be wrong to exclude private companies simply on ideological grounds; instead, the test should be how the company wants to use the data to improve NHS care”. The distinction between public and private goods is tricky in the NHS as the term public is not used consistently. Although the NHS is a public sector organisation it largely provides a private good i.e. individual healthcare. Public services however have to split their attention between increasing the quality of private goods (such as the individual quality of care) and public goods – such as issues of equity in the health services, creating healthy communities and controlling contagion. Whilst it is conceivable that care.data could be used relatively equally between public, private and third sector organisations to increase the quality of individual services and treatments, larger public goods - like ensuring the equality of outcomes in healthcare - should not move out of sight.
The lack of public ownership of NHS data sets carries with it the same risks as the commercialisation of academic research and teaching. NICE (National Institute for Health and Care Excellence) demonstrates the importance of an independent and public body to assess the effectiveness of particular treatments across the board, in the face of market relations and sector-based interests. A research agenda dominated by market relations may exacerbate existing public health inequalities. Despite assurances that decisions on the availability of data will be made on a case by case basis in relation to whether the organisation wants to improve patient care, there is the possibility that – structurally and not individually – market interests would distort this rich data set which could be used to address populations that often fall through the cracks. Public health research should be able to represent the needs of populations affected by structural inequalities. Already particular conditions such as Alzheimer’s disease, with its associated expensive drug treatments and powerful campaigning lobby, draws in more NHS and research money, and specialist services, than research and service provision for older people with complex needs who may not fit easily into a diagnostic category. Likewise in mental health, comparatively large amounts of money are channelled into biomedical treatments and genetic research, whereas comparatively little is spent on improving people’s experience of mental health services, or tackling the complex problems that arise from poverty and discrimination – something that service user-led research into mental health repeatedly shows would make the biggest difference to people’s lives.
The marketisation of NHS data sets, even if individual organisations have good intentions, means that key public goods such as equality are at risk.
Laura Griffith is a lecturer at the Health Services Management Centre in Birmingham. Her research concerns the experience of health and illness, mental health, and inequalities in health – particularly ethnic inequalities. More recently her work has involved the application of qualitative research to health services improvement and health policy.
A longer version of this article is available at: http://www.discoversociety.org/care-data-what-should-we-really-be-worrying-about/#.