JMIR Publications

ABSTRACT

Background:

Patient and public involvement (PPI) in health research is an area of growing interest. Several studies have examined the use and impact of PPI in knowledge syntheses (systematic, scoping, and related reviews); however, little research has focused specifically on patient or public co-authorship of such reviews.

Objective:

We sought to identify published systematic and scoping reviews co-authored by patient or public partners; and to examine characteristics of these co-authored reviews, such as which journals publish them, geographic location of research teams, and terms used to describe patient or public partner authors in affiliations, abstracts or article text.

Methods:

We searched CAB Direct, CINAHL, Cochrane Database of Systematic Reviews (Ovid), EMBASE (Ovid), MEDLINE (Ovid), and PsycInfo from 2011-May 2019, with a supplementary search of several PPI-focused databases. We refined the Ovid MEDLINE search by examining frequently used words and phrases in relevant search results, and searched Ovid MEDLINE using the modified search strategy in June 2020.

Results:

We screened 13,986 results, and found 37 studies which met our inclusion criteria. In line with other PPI research, we found that a wide range of terms were used for patient and public authors in author affiliations. We also investigated where in the reviews the partner co-authors’ roles were described, and when possible, what their specific roles were. Often, there was little or no information about which review tasks the partner co-authors contributed to. Further, only 13% (n=5) of reviews mentioned patient or public involvement as authors in the abstract; often involvement was only indicated in the author affiliation field, or in the review text (most often in the Methods or Contributions section).

Conclusions:

Our findings add to the evidence that searching for co-produced research is difficult due to the diversity of terms used to describe patient and public partners, and the lack of consistent, detailed reporting about PPI. For better discoverability, we recommend ensuring that patient and public authorship is indicated in commonly searched database fields. When patient and public authored research is easier to find, its impact will be easier to measure.