Background: health research co-authored by patient or public partners is difficult to find due to the diverse terms used for such authors, and a lack of clarity in author affiliations. Some ways these authors may be described include co-researchers, co-producers, citizen scientists, or representatives of a group (e.g. an advocacy organization or indigenous community). Previous research has explored the nature of patient and public involvement (PPI) in systematic reviews, but little research focuses on authorship specifically.
1) to identify published systematic and scoping reviews co-authored by patient or public partners;
2) to explore whether reviews in certain journals, countries, or disciplines are more likely to include patient or public partner authors;
3) to determine useful search terms to find reviews with patient or public partner authors, based on how such authors are described in affiliations, abstracts or article text.
Methods: we will search Ovid MEDLINE and Epistemonikos from 2011 to present (when the GRIPP checklist debuted). Search strategies will build on published search filters for patient and public involvement, as the review authors believe these terms will be most effective for finding patient or public partner-authored reviews. We will also search the Cochrane Methodology Register, PROSPERO, databases from PCORI and NIHR INVOLVE; will use forward and backward reference searching for selected papers; and will handsearch selected journals.
Inclusion criteria: systematic or scoping reviews on health topics that state that at least one author is a patient or public partner.
Data extraction: two review authors will screen search results and extract data including country where research was conducted, terms used to describe the patient or public author(s), and their role in the review.
Results and Conclusions: the review is underway, and final results will be presented at the Colloquium. The protocol is registered with PROSPERO.
Patient or healthcare consumer involvement: we will solicit consumer input on the review on TaskExchange. We also plan to submit the review for publication in a journal that includes patient peer reviewers.