Paul Thornton has brought to my attention some research that the Department of Health published quietly at the end of 2009 (and which undermines Departmental policy).
It is the Summary of Responses to the Consultation on the Additional Uses of Patient Data undertaken following campaigning by doctors, NGOs and others about the Secondary Uses Service (SUS). SUS keeps summaries of patient care episodes, some of them anonymised, and makes them available for secondary uses; the system’s advocates talk about research, although it is heavily used for health service management, clinical audit, answering parliamentary questions and so on. Most patients are quite unaware that tens of thousands of officials have access to their records, and the Database State report we wrote last year concluded that SUS is almost certainly illegal. (Human-rights and data-protection law require that sensitive data, including health data, be shared only with the consent of the data subject or using tightly restricted statutory powers whose effects are predictable to data subjects.)
The Department of Health’s consultation shows that most people oppose the secondary use of their health records without consent. The executive summary tries to spin this a bit, but the data from the report’s body show that public opinion remains settled on the issue, as it has been since the first opinion survey in 1997. We do see some signs of increasing sophistication: now a quarter of patients don’t believe that data can be anonymised completely, versus 15% who say that sharing is “OK if anonymised” (p 23). And the views of medical researchers and NHS administrators are completely different; see for example p 41. The size of this gap suggests the issue won’t get resolved any time soon – perhaps until there’s an Alder-Hey-type incident that causes a public outcry and forces a reform of SUS.