“Expect to see blood in your semen.” This was the shouted afterthought from the clinician to a middle aged patient with prostate cancer across a crowded waiting room as he left the consultation. A room of strangers turned to look at him now thinking, as he pointed out wryly, about his sexual activity. Just a small thing. But one which affected this patient deeply. This was just one of the filmed patient experience stories which can be used as triggers for real change in staff behaviour and service delivery.

We were at a seminar last week in Exeter to discuss latest research on how the NHS uses information about patient experience. We heard that the NHS is the envy of the world, with the most comprehensive patient experience data system. This includes almost 20 million Family and Friend Test items and well established and validated inpatient and GP survey returns. But as with patient safety incidents, we often collect too much and do too little with it.

At a national level, we know that ratings by patients have changed little over a decade. And that general satisfaction levels are consistently high at around 80-90%. But research shows examples of patients giving high overall ratings on a survey but, when probed, identifying really poor practice in their care. As one speaker noted, there is a difference between “the tick and the talk.” We also heard how practice performance data on communication in the GP survey masked real variation between individual GPs.

It is often difficult for service managers and staff to make sense of the feedback from patients. The numbers and the freetext don’t always match up. We need different information to measure performance from data to drive change. For the former, we need standard instruments and representative populations, adjusted for casemix. But to challenge organisational culture and behaviour, one story can be enough. I was reminded of the profoundly moving film by Dr Kieran Sweeney reflecting on the “small humiliations” he encountered as a cancer patient. This has become a useful teaching and training tool (indeed, contributing to an emerging and powerful sub-literature on the experience of doctors as patients).

We all know the importance of asking patients about the care they received. But there were few examples of how patient feedback has really changed the way we work. (Although I did find out that, as a result of feedback from NHS Friends & Family test, marmite is now offered in many inpatient wards. Who knew?)

We all know that change is hard. Particularly for behaviours and ways of working deeply rooted in professional and organisational culture. We reflected together on the way in which service changes tend to focus on the quick fixes of patient problems—turning off the music in the waiting room or changing signage. Changing the way we do things is more difficult.

We talked about new developments, including use of social media and platforms like Patient Opinion. There were examples of patients tweeting about problems, for instance around discharge medication, and getting an immediate response from a hospital director of pharmacy and change in process. Powerful—but also somewhat capricious, compared with more systematic forms of capturing and acting on patient feedback.

The good news is that we have better evidence now that patient experience correlates well with other markers of quality and effectiveness. We know what feels intuitively right—organisations with high levels of patient satisfaction have high ratings for staff experience (or vice versa). But it is also a distinct domain and can identify problems (such as cleanliness or dignity) which other measures may not reach.

There is also an array of interesting new research in this area. This includes substantive studies funded by NIHR, from a comprehensive programme of research in and around the GP survey, to evaluation of online ratings by patients and use of real-time patient feedback in hospitals. Other studies aim to show the ways in which frontline staff can use patient experience data to drive service improvements and how text mining methods can help make better use of freetext information in cancer surveys. These are just some of the NIHR research studies now underway on the use and usefulness of patient experience data.

The message from the seminar was clear. We have an unrivalled resource in the patient experience data we collect. But we could do much more with it. We are getting better at asking people how they were treated. But we are only starting to listen and act.

Tara Lamont is a scientific adviser for the NIHR Health Services & Delivery Research Programme. The views expressed here are her own.

Competing interests: None declared.