Maps are for everyone: PPI in systematic evidence maps can have significant benefits for understanding findings, relevance and application

Article type
Authors
Stokes G1, Sutcliffe K1
1EPPI Centre, Department of Social Science, University College London
Abstract
Background:
Evidence maps describe and characterise broad areas of research evidence in a navigable, user-friendly format. The benefits of patient and public involvement (PPI) in systematic reviews are well established, but few evidence maps have involved PPI. We undertook a systematic evidence map as part of a series of systematic reviews on Lyme disease in which PPI proved highly valuable.

Objectives:
To describe the potential benefits of conducting PPI in the production of evidence maps.

Methods:
We searched 17 electronic databases and conducted web-based searching. We included papers on Lyme disease in humans published from 2002 onward. Papers were mapped according to their main topic focus (e.g. diagnosis, treatment etc.) and other aspects (e.g. country, participant characteristics etc.). PPI undertaken for the series of reviews involved face-to-face consultations and an online survey with eight patient advocacy groups.

Results:
We included 1098 papers. We did not aim to conduct PPI for the map, but PPI for the broader review helped us make sense of this vast body of evidence in four key ways. Patient groups: 1) showed a keen interest in the map, helping us to recognise patients as a key audience; 2) helped us identify useful grey literature, as some groups had catalogued available research themselves and others had conducted their own research; 3) identified the significance for them of areas with a dearth of literature (e.g. we identified relatively few papers on Lyme disease treatment or prevention); 4) helped us to understand the relevance for them of the available evidence (e.g. by expressing concern that most papers were from Europe and the USA, rather than the UK).

Conclusions:
Engaging with patient stakeholders for a map can help to contextualise findings and their relevance. Involving patients' views 1) broadened the map's inclusivity, 2) signposted relevant grey literature, 3) highlighted where a dearth of literature was significant, and 4) provided insight into the relevance of available research to patient groups. Those undertaking systematic evidence maps should consider PPI to provide insight into areas of importance for this key audience.

PPI:
While we did not plan to conduct PPI for the evidence map, PPI for the broader series of reviews proved highly valuable for understanding the map's findings and application.