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

Session: 

Oral session: Patient or healthcare consumers involvement and shared decision-making (7)

Date: 

Tuesday 18 September 2018 - 11:30 to 11:40

Location: 

Ochil 2

All authors in correct order:

Stokes G1, Sutcliffe K1
1 EPPI Centre, Department of Social Science, University College London, UK
Presenting author and contact person

Presenting author:

Gillian Stokes

Contact person:

Gillian Stokes
Katy Sutcliffe
Abstract text
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.

Relevance to patients and consumers: 

We aim to show the benefits of patient and public involvement (PPI) in evidence maps. The benefits of PPI in systematic reviews are well known, but few evidence maps involve PPI. Evidence maps describe research on specific topics in a user-friendly format. They identify how much research is available on a topic and what that research focuses on, e.g. the types of patients or settings. Maps are distinct from systematic reviews as they do not assess how well research was done or what it found. We will share how, in an evidence map on Lyme disease, PPI helped us to understand whether the research addressed issues of importance to patients.