Identification and Reporting of Patient and Public Partner Authorship on Knowledge Syntheses: Rapid Review

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, few studies have focused specifically on the patient or public coauthorship of such reviews. Objective This study seeks to identify published systematic and scoping reviews coauthored by patient or public partners and examine the characteristics of these coauthored 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 to 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 13,998 results and found 37 studies that 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. In some cases, partners were easy to identify with titles such as patient, caregiver or consumer representative, patient partner, expert by experience, citizen researcher, or public contributor. In 11% (n=4) of studies, they were identified as members of a panel or advisory council. In 27% (n=10) of articles, it was either impossible or difficult to tell whether an author was a partner solely from the affiliation, and confirmation was found elsewhere in the article. We also investigated where in the reviews the partner coauthors’ roles were described, and when possible, what their specific roles were. Often, there was little or no information about which review tasks the partner coauthors contributed to. Furthermore, only 14% (5/37) of reviews mentioned patient or public involvement as authors in the abstract; involvement was often 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 coproduced research is difficult because of 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 authorships are indicated in commonly searched database fields. When patient and public-authored research is easier to find, its impact will be easier to measure.

Youth and family engagement in childhood disability evidence syntheses: A scoping review

“…For example, it was impossible to know whether some aspects of youth and family engagement were not conducted or not reported. This is consistent with Ellis et al (2021), in which almost half of the included articles in their rapid review (18/37, 49%) were vague or nonspecific regarding the roles and contributions of patient stakeholders. Childhood disability researchers engaging youth with neurodisabilities and their families in evidence syntheses are encouraged to keep records and report the details of their youth and family engagement.…”

“…For example, it was impossible to know whether some aspects of youth and family engagement were not conducted or not reported. This is consistent with Ellis et al (2021), in which almost half of the included articles in their rapid review (18/37, 49%) were vague or nonspecific regarding the roles and contributions of patient stake- and the ACTIVE framework (Pollock et al, 2019) should be used to transparently report how children with disabilities and their families were engaged in the review process.…”

Hidden in plain sight? Identifying patient-authored publications

“…However, a major challenge for conducting this research is the difficulty in identifying patient-authored publications. There has not been a clear or consistent way of identifying patient authors [ 26 , 30 ]. Searching articles by hand for ‘clues’ on which authors may be patients (e.g.…”

A Virtual, Multi-Session Workshop Model for Integrating Patient and Public Perspectives in Research Analysis and Interpretation

“…It also served to reinforce our belief that lived experience is a valued and equal form of expertise and that our workshop was designed with this patient-centered approach in mind. Both BB and AG meet the International Committee of Medical Journal Editors criteria for authorship, and we acknowledge their invaluable insights in the development of this model (Richards et al, 2020; Ellis et al, 2021).…”