Our major piece of proactive policy work in 2019-20, and possibly beyond, is a programme to investigate patient experience.

The first report from the programme, Being A Patient, outlines the results of the research and scoping phase.

It finds that the considerable activity in the health and care system devoted to measuring patient experience approaches it in quite narrow terms. It assesses mainly the experience of receiving care, and is used as a form of performance management within the system. This approach has its merits, but doesn’t truly capture things from the patient’s point of view.

Patients told us that being a patient is uncomfortable, tiring and worrying; their testimony had the unpleasant nature of being ill front and centre, in a way that system-oriented measures simply don’t.

The report then considers what a new approach to patient experience might involve, and identifies avenues for exploration. We found that patients reported different experiences depending on the extent of the impact of their illness on their day-to-day lives, which challenges the traditional view that generic approaches are the way to go in capturing patient experience.

We also found broad, though not universal, support for the term ‘patient’ as a useful general term, in preference to possible alternatives. Our findings did however suggest a need to define it more closely and shapes a meaning for it that enjoys even more widespread acceptance.

Read Being A Patient in full

Read the executive summary

Read the appendix to Being A Patient, outlining the methodology and full survey results.

This work was funded by an unrestricted grant from AstraZeneca UK.