What is Patient Experience?

Even before the Francis Report on Mid-Staffordshire Hospital, the Berwick Report on the Francis Report, and the Keogh Mortality Review of fourteen hospitals with high Hospital Standardised Mortality Ratios – all of which urge providers to listen to patients – the English Government had pinned its colours to the mast of patient experience. In the 2010 NHS White Paper Equity and Excellence: Liberating the NHS the Department of Health view was that “healthcare systems are in their infancy in putting the experience of the user first” and an ‘information revolution’ was needed so that NHS organisations could capture and analyse ‘experience’.

The problem is that patients and service users, clinicians, politicians, managers and academics often have something rather different in mind when they refer to patient (or user) experience. This matters because we pretty much all agree that measuring quality is an essential step towards producing quality. Hence measuring the quality of patient experience is essential if we are to produce better patient experience. The question that obviously follows is how you go about measuring something when you cannot agree what the ‘something’ is.

In my article in Clinical Governance: An International Journal I discuss three common understandings of patient experience.

The first approach derives from philosophical ‘naturalism’. This sees illness as primarily a matter of biological dysfunction, which it is the job of medicine to correct.

The second approach sees patient experience as meaning ‘the experience of being a customer in a care organisation’. The concern here isn’t really for ‘what patients are experiencing’ but for ‘what patients think of us as a provider’. In the customer experience approach, patient experience is easily conflated with patient satisfaction and we end up with measures such as the Friends and Family test. The F&F test reveals almost nothing of what it’s actually like to be ill in hospital. There are better ways of getting at the experience of care provision though, as sites such as PatientOpinion are demonstrating.

Thirdly, there is a broadly phenomenological approach to understanding patient experience. Here the interest is in how people experience the totality of living with health, illness and treatment. This approach is behind the website healthtalkonline, where you can watch video interviews with patients about what it is like – for example – to live with terminal illness. A similar commitment to understanding the fine grain of lived experience is apparent in the Patient Voices programme, where people present brief stories about an aspect of their experience using sound and still images.

In the full article, I illustrate these three approaches using an example (taken from healthtalkonline data) of a patient describing her experience of placental abruption. I demonstrate that all three notions of ‘patient experience’ are important, that each is related to the others, and that all three deserve to be intelligently measured.

First, medicine needs naturalistic accounts of illness as biological dysfunction together with objective indicators of the impact of clinical intervention, because it seeks to change the course of biological events. Second, institutions need some way of measuring ‘customer experience’ to know whether they are meeting people’s basic social needs. And third, patients need care providers to comprehend and respond to what it is like to live with ill health because to a patient, overcoming illness (or dying) means much more than achieving a measurable clinical outcome or a cost-effective intervention.

In the era of scientific medicine, heathcare has not been overly concerned with the totality of the experience of being unwell. The richness of experience – the whole intimate narrative of what life and illness are to the unwell person – has tended to be reduced, at best, to a range of biological, social and psychological indicators. This reductionism is not, for the most part, because people who work in healthcare are not interested in the lived experience of illness. It is because professional caregivers have important goals to fulfil – such as providing treatment interventions to the patients in their care – and these inevitably come to dominate their thinking. But hearing more about lived experiences of wellness, illness, and disability can help to enhance care. It can also, by ‘re-personalising’ patients, reconnect caregivers to their commitment to caring.

You can read my article in Clinical Governance: An International Journal Vol 18 no 4 from 18th October 2013.