Using PROMs in Healthcare: Who Should Be in the Driving Seat—Policy Makers, Health Professionals, Methodologists or Patients?

The recent Cancer Strategy for England (2016) highlights that by March 2017 NHS England will have agreed an approach for data collection which includes patient-reported outcome measures (PROMs) as a means for assessing long-term quality of life (QoL) for cancer patients [1]. Moreover, it indicates that “people affected by cancer (and clinical leaders) … will be in the driving seat for improving quality across cancer pathways” ([1] p. 18).

For this to work and be sustained requires all stakeholders and end-users—including policy makers, health professionals, methodologists and patients—to contribute to the co-construction of a process (including PROM selection) that is relevant and fit for purpose. Several key questions must drive the process: what do the different stakeholders need from the QoL data? (what to measure?); how will these needs be reflected in the choice of PROM? (how to measure?); when should QoL be assessed? (when to measure?); and how can agreement between stakeholders be achieved? (what does consensus look like?). Additionally, consideration must be given to the education and support required to support data interpretation (what does the data mean?). Strong collaborative relationships between key players will be crucial throughout the process, from question definition to implementation, to ensure buy-in for the recommendations [2] and to ensure consistency in the way data are interpreted.