I’m at the NICE conference this week: an eclectic set of speakers and participants interested in ‘quality’ in what we are learning to call ‘health and social care’. For a long time, NICE has put an emphasis on public and patient involvement, through its Citizens Council and patient and carer representation on committees and guideline development groups, but also through the use of consultation with stakeholders. But it is striking that an organisation established as an experiment in Health Technology Assessment and dominated by health economists, had a whole stream on Tuesday on ‘person-centred care’ covering involvement, empowerment, informed patients and patient experiences.
This made me reflect on where we are with ‘patient involvement’, both in health research and policy, and indeed from the perspective of academic medical sociology.
It was fascinating to watch the different ways in which patient experiences were brought into the quality debate. Sometimes they were another kind of evidence – whether the bald numbers of trip advisor style ratings systems or more narrative forms. Sometimes patient experience was a value or endpoint and we were asked to hunt for the best ways to use evidence to improve it – or convey information for patients to use. Victoria Thomas, associate director of the patient and public programme at NICE said information must flow both ways… but there are very different kinds of information being brought in through patient voices. Are all these ‘evidence’ and if so for what?
Though we are used to evidence being something that can be packaged up and moved around, the voiced nature of patient involvement does seem important. The loudest applause of the day was received by a former president of Parkinson’s UK, Liz Wolstenholme, who spoke passionately about her continued frustrations not only with the disease but the way she was treated. The ‘passionately’ there is important. People at conference seem to value the sense of authenticity that comes from someone telling their story.
An extreme example of this desire for authenticity and its power was the example of Michael J Fox’s testimony to the Senate Appropriate Subcommittee in 1999 where he decided not to take medication before appearing. In a conference setting patient voices also have emotional content, which move as well as entertain. This is important to people. Tweets on such sessions frequently describe them as ‘powerful’.
But these narratives have other features, they contain a range of information. One of the striking things about Liz Wolstenholme’s talk was the emphasis on apparently mundane matters in helping create good patient experience. So she emphasized the importance of reserving parking spaces for patients near a clinic, or giving explanations for changes to appointment times. This was not about the content of ‘treatment’ but clearly made a difference to ‘care’.
In another context, both Sue Ziebland and Jeanette Pols, who write about patient experiences in healthcare in different ways, have also emphasized these apparently mundane issues as something of value in patient accounts. Accessing other patient stories, they suggest, can help people learn how to navigate health organisations as well as their own symptoms. For them, the web provides a useful place to collect such information for patients to read, but I suppose insofar as they raise organizational issues they are also important for professionals.
But if this is evidence, it is striking how far it is from the model of evidence that otherwise dominates at NICE, which is focused on clinical trials and their systematic review. One way of accounting for them has been as ‘colloquial evidence’ – spoken information that clusters patient expertise with expert judgement from clinicians and other stakeholders. But in that case should we not consider questions of representativeness and representation? Sociologists (like Graham Martin) have started to do this but I think there is more to do.
It is natural I suppose to invite good speakers, the willing, to come to conferences, and to celebrate their endeavours. But what of the people who can’t or won’t put themselves forward in this way? People who chose to withdraw from contact with the clinical world, or from the ‘diagnosis’ and define themselves in other ways. PPI often seems to rely on the same individuals spreading themselves thinly around research grant panels, conferences, hospital trusts and patient organisations, indeed there has been research on fatigue and the ‘work’ that this entails. How can we listen to more than 1, 2 or 3 patients who can be put up on a podium?
There are solutions being proposed. A couple of years ago, NICE produced general guidance on patient experience in adult NHS services. These drew on the contributions of patients and carers sitting on the guideline group and organisational stakeholders, but also experiences captured through a range of quantitative and qualitative studies used as evidence for the recommendations. Healthtalkonline is a repository of patient stories organized by different conditions which is available for members of the public or for health professionals to use. Angela Coultor has recently argued that collecting data on patient experiences is not enough and proposed ‘a national institute of patient (or service user) experience’ to work on how such data can be drawn together and used, as well as methodological issues. I would be interested in more sociological discussion of these initiatives. Part of the history of medical sociology has been collecting patient experiences and making their voices heard in the academic literature at least. That role is now in question. But we may still have something to offer the relatively new field of patient involvement from a disciplinary perspective, or we may wish to draw clear boundaries between PPI and our own work.