Assembling the evidence for patient centred care

National Voices, a health and care charity coalition, has launched “a new set of take-away resources which set out the best ways to engage people and make person centred care happen.” These narrative reviews synthesise the evidence from five domains—promoting prevention; improving information and understanding; enhancing experience; supporting self management; and supporting shared decision making. Based on evidence from nearly 800 systematic reviews, they take the form of “simple guide” booklets that can be downloaded from the National Voices website (www.nationalvoices.org.uk/evidence).

With the overarching aim of providing evidence to “support commissioners and providers to access, understand and make use of the best evidence for various approaches to involving people in their health and healthcare,” these resources have achieved what they set out to do. The evidence in each of the five domains is summarised into “key themes” for patients, professionals, and organisations, and the evidence covers improvements in knowledge, experience, health service use and cost, and health outcomes. Thus the resources provide a valuable summary across multiple types of interventions. Of added value is the well referenced section that supports the recommendations and highlights interventions where the evidence base is strong.

Like all summaries of evidence, the recommendations are only as good as the evidence that has been synthesised. Relatively little evidence exists on improving health outcomes. For example, the summary table on promoting prevention has nine “improvement initiatives,” which include interventions such as opportunistic advice, self help programmes and websites, and mass media campaigns. The authors conclude that such initiatives may improve process measures and intermediate health outcomes such as smoking and alcohol consumption, as well as other health behaviours. Another limitation is that the evidence base largely comprises studies with short durations of follow-up. It is therefore hard to know whether interventions have a sustained influence over time or whether their effects become attenuated, particularly in the absence of continuing interventions.

Other issues arise also. It is difficult to determine effect sizes because little quantifiable data are presented, either in relative or absolute terms. The quality of evidence in relation to observational or experimental studies is not made sufficiently clear, so the likelihood of bias is difficult to judge. Lastly, some of the domains seem to overlap—for example, “improving information and understanding” for patients and “supporting shared decision-making” have much in common. These shortcomings are almost inevitable, when many of the interventions are multifaceted, are aimed at patients and professionals simultaneously, and are intended to influence the process of care that health professionals provide and the outcome of care that patients experience as a consequence. Rather than being a criticism of the authors’ approach, it is an acknowledgment of how challenging it is to summarise complex evidence into a neat digestible format.

Who should read these recommendations? The reviews are relevant to a broad range of constituencies that are concerned with health. These include policymakers who need to commission cost effective services with an established evidence base; funding organisations that need to be targeting areas where the evidence base is incomplete or poor; patient advocacy and service user groups that need to recommend effective and cost effective interventions to their members; and educational organisations at undergraduate and postgraduate level that need to direct students to these reviews as important summaries of the current evidence base on person centred care.

The National Voices’ initiative democratises evidence and encourages patient advocacy groups to consider and use systematic reviews of research as part of their recommendations for service users and health policy makers. The next iteration of reviews might provide more digestible formats and quantifiable recommendations that include the trade offs that patients may want to discuss with their healthcare providers.

The initiative also highlights the importance of involving patients in setting research agendas and priorities. For example, little evidence exists on patients’ views, experiences, and preferences regarding interventions for chronic pelvic pain.1 Our goal should be the sharing and prioritising of research topics that engage patients, clinicians, and researchers, and that have arisen from a systematic assessment of existing evidence.2 3