Patients' decisions on joint replacement need data on earnings and welfare benefits

The study by Lee Bayliss and colleagues1 (Feb 13, p 1424) provides useful prognostic evidence of the lifetime risks of joint revision. After hip or knee replacement, the revision rate is 5% for men and women older than 70 years, but as high as 35% for men in their early 50s.1 But the risk of revision needs to be weighed against the potential gains from remaining in work and continued earnings. Research is needed to help patients decide and in theory, this research is possible in England. It requires use of the National Health Service (NHS) resource, NHS Digital, to enable linkage between NHS data and data on benefits and earnings held by the Department for Work and Pensions and Her Majesty's Revenue and Customs. These government departments need share only identifiers, not the patient's health or earnings records, and researchers would link only de-identified extracts from health, benefits, and earnings records, under strict controls.

In practice, however, such research is unlikely to be allowed in England. Under section 122 of the Care Act 2014, NHS Digital can only disseminate data for the “provision of health care or adult social care or the promotion of health”.2 Interpretation of the Care Act by NHS Digital and the newly established Independent Group advising NHS Digital on the Release of Data (IGARD) is increasingly restrictive, and NHS Digital has opted out of the upcoming Digital Economy Bill, which is expected to allow cross-sectoral linkage of administrative data for research.3 Researchers can encourage debate about the potential harms of these restrictions by engaging more directly with NHS Digital, IGARD, and the Health Research Authority to increase awareness of research that could be done in England. More consultation is also needed with patients, so that their voices are heard about research that meaningfully reflects health impacts on their lives, not just the use of health services. Crucially, NHS Digital and IGARD need to clarify how they weigh up the loss to patients of the research foregone. England has high- quality administrative data from health and other sectors that is not being used for patient benefit. Patients need to know this.