For some time now, the old `doctor knows best’ attitude has been shifting in favour of dialogue with patients. Sometimes it is the better informed and more assertive patients who are driving the change, but clinicians, too, are becoming more attuned to factors such as gender, culture and faith which can influence experience, diagnosis and treatment. Individual conversations between doctors and patients are an important part of a learning and more responsive health service. But how can policy-makers listen and learn?  Patient confidentiality presents barriers, as does the practical impossibility of observing hundreds, even thousands, of consultations.

In England, a national network of 150 local Healthwatch organisations has been collating and analysing patient feedback for structured reports that provide valuable insights for researchers, health-care practitioners and policy-makers. Healthwatch Dorset’s report on Mental Health Awareness Among Black Minority Ethnic Communities is just one example among thousands that are published every year.

Alongside Healthwatch, many other national organisations produce similarly insightful reports. Public Health England, for example, has published Faith at End of Life, and the Race Equality Foundation has reported on The maternal mental health of migrant women.

Until very recently, it was hard to track down reports such as these. The Healthwatch network alone publishes its reports across 150 local Healthwatch websites, all designed and structured differently.  A further complicating factor is that public and voluntary sector organisations (the main sources of these studies) are not always good at maintaining their websites.  Links get broken, pages go out of date, and valuable resources slide away into the realms of `grey literature’.

In Britain, these problems have now been largely overcome by the Patient Experience Library, an initiative that has gathered around 35,000 reports on patient experience and patient/public involvement. There is now, for the first time, a repository of mainly qualitative evidence which constructively overcomes many of the practical difficulties involved in searching out ephemeral literature.  A sophisticated search function means that researchers need only enter basic keywords such as `mental health’, `nutrition’, `well-being’, etc.  Multi-layered qualitative analysis then presents search results with relevance scores – obviating the need for laborious filters and `advanced search’ functions.

It is likely that NGOs, think tanks and government bodies across Europe are producing similar qualitative evidence on patient experience. It is equally likely that the capture and cataloguing of their output is patchy.  The Patient Experience Library might offer a working model for bringing more of this kind of evidence into the light – especially if it could link with knowledge translation platforms such as EVIPNet, established by the World Health Organization.

The task of creating the Library has revealed a series of challenges for the collection and use of qualitative evidence on patient experience.

One immediate challenge is that the quality of patient experience reporting is variable. Bodies like Healthwatch England are working towards a set of common standards for gathering and presenting qualitative evidence, but they are not there yet.

A second difficulty is that the UK government seems to have no measure of effectiveness for patient voice organisations. The Department of Health’s funding for Healthwatch is channelled through local authorities.  But it is not ring fenced, so at least £10 million of it fails to get through to front-line local Healthwatch services, some of which have seen continuous funding reductions since their inception.  It could legitimately be asked what effect financial constraints have had.  Is there a link between the level of funding and the quality and effectiveness of the network’s published evidence?  Unfortunately, no-one seems to know.

A third consideration is the nature and effects of changing political intervention. In 1978, Community Health Councils were established to provide patient voice within the NHS.  In 2003, they were replaced by Patient and Public Involvement Forums.  Those, in turn, were superseded by Local Involvement Networks, which, a few years later, gave way to Healthwatch.  Every single one of these initiatives has produced valuable intelligence.  But not one of them has left a comprehensive archive.  With each change in political direction, an existing knowledge base gets lost.  And if (when) Healthwatch loses its political lustre, another whole tranche of knowledge could slip from the grasp of researchers and policy-makers.

With this last point in mind, it might be imagined that the Patient Experience Library has been set up and funded by a government body. In fact, it is the work of enthusiasts who have spent two years working in their free time and at their own cost to trawl hundreds of websites, tracking down the literature, and building search functionality around it.  Features such as weekly alerts on new additions, map functions and digest reports are made freely available.  Access to the full search functionality, however, is necessarily by subscription at present.  The ambition is to make the information free to users – but while government is aware of the resource, it has so far seen no reason to support it.

The interplay of culture and health needs to be understood by clinicians, who can develop their understanding through training, and through daily dialogue with patients. Policy-makers, too, need to understand the culture-health dynamic.  For them, the key is access to reliable and accessible evidence and a steady building of the knowledge base over time.  The Patient Experience Library has brought the current knowledge base on patient experience into the light.  The challenge now is to identify ways of increasing access to the information and learning from it.

This post was written by Miles Sibley, Patient Experience Library