We have today launched Being A Patient, the first report from our programme of work on patient experience. It suggests that it is time for a fresh look at patient experience: while the well-established discourse around it was a welcome breakthrough when it emerged, it is now approaching thirty years old and would benefit from some new ideas.

We found 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. That’s all fine as far as it goes, but it doesn’t truly capture things from the patient’s point of view: if you want to know what being a patient is like, looking at the traditional measures of ‘patient experience’ won’t give you a full 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. That’s not to say that a new understanding of patient experience simply needs to amplify the negative: but it does need to capture what it’s like to live life with a health or care need, not merely what it’s like to receive this or that service.

So, what might a new approach to patient experience involve? There is much work still to do in order to figure this out, but the report identifies some promising 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. The patient-doctor relationship also might merit more focus – it’s present in the literature around patient experience, but tends not to be prominent among measures used in practice, even though patients told us it made a big difference to whether their experience was good or bad.

One thing we wouldn’t expect a future approach to involve would be ditching the word ‘patient’ – respondents to our surveys were generally at ease with the term, and actively affronted by some of the alternatives. Where more work might be needed is in defining it more closely, to create a positive definition that reclaims it, and overcomes the reservations some people have about it, for instance over whether it is too narrowly medical or risks defining people merely as their illness. But as a term it remains useful, and is clearly not going anywhere.

Our patient experience programme will continue throughout 2020, and we hope to work with a range of partners in exploring these issues further, and developing strong recommendations for change. In the meantime, you can read the report in full here:

• Full report
• Executive summary
• Appendix - survey methodology

John Kell
Head of Policy