In 2009, the English NHS introduced a world leading initiative in the pursuit of quality healthcare: the measurement of patients’ views about their own health became a routine part of the delivery of NHS funded services. In an initiative led by the Department of Health, robust and reliable condition specific and generic (EQ-5D) patient reported outcome measures (PROMs) are now completed by patients both before and after four elective surgical procedures.

Literally millions of data points have been collected since then, yielding powerful insights into how much surgery improves health; how the performance of hospitals and surgeons differs; and how cost effective surgical procedures are. The evidence is relevant to patients when choosing treatments and providers; the GPs who refer them; hospital surgical teams wanting to benchmark performance; budget holders wanting to commission high quality care; and policy makers and regulators (Devlin and Appleby 2010). The response rates achieved by the PROMs programme are remarkably good, and the costs of data collection and analysis are reasonable.

The Department had bold plans for PROMs. Their use in surgery for hips, knees, varicose veins, and hernia was intended to be followed by the roll-out of similar initiatives in a wide range of other surgical procedures, long term conditions, and other key areas of NHS spending. So how has this laudable initiative progressed since its initial success?

The answer is, sadly, barely at all.

The PROMs programme survived the change of government in 2010, and continued as part of the Outcomes Framework. Data have continued to be collected in elective surgery and published by the Health and Social Care Information Centre. But the PROMs programme has effectively stalled. The restructuring of the NHS led to responsibility for the PROMs programme shifting from the Department of Health to NHS England – and in the handover, nearly a year went by where the PROMs programme rumbled along with no access to its enthusiastic team of pro-bono advisors. NHS England is doing its best at picking up the threads – but has very limited budgets. The problem seems to be that, as with many other NHS activities, the 2012 reorganisation led to a loss of focus for the PROMs programme.

The good news is that behind the scenes, pilot projects and experiments with PROMs, coordinated by NHS England, have continued to thrive. Enthusiastic and experienced clinicians are using PROMs in localised settings, with impressive initiatives of their own – including as part of the evidence patients and clinicians need to engage in properly informed shared decision making. And researchers are using the extraordinarily rich data generated from elective surgery to produce new findings on everything from the effects of hospital competition (eg Feng et al 2014 ), to the impact of deprivation on health outcomes (eg Neuberger et al 2012), and whether care is delivered in public or private setting has an impact on patients’ health related quality of life (eg Chard et al 2011)

The PROMs programme deserves the full and passionate support of policy makers, and a renewed commitment to putting health outcomes at the heart of healthcare decisions. Key to this is looking beyond the logistics of data collection, to ensuring the data drives real improvements in quality for patients – and a commitment to expanding routine outcomes measurement beyond the initial four surgical procedures.

Nancy Devlin, director of research, Office of Health Economics, London

John Appleby, chief economist, The King’s Fund, London

David Parkin, professor of health economics, King’s College, London