Recognizing patient partner contributions to health research: a systematic review of reported practices.

BACKGROUND: Patient engagement in research refers to collaboration between researchers and patients (i.e., individuals with lived experience including informal caregivers) in developing or conducting research. Offering non-financial (e.g., co-authorship, gift) or financial (e.g., honoraria, salary) compensation to patient partners can demonstrate appreciation for patient partner time and effort. However, little is known about how patient partners are currently compensated for their engagement in research. We sought to assess the prevalence of reporting patient partner compensation, specific compensation practices (non-financial and financial) reported, and identify benefits, challenges, barriers and enablers to offering financial compensation. METHODS: We conducted a systematic review of studies citing the Guidance for Reporting the Involvement of Patients and the Public (GRIPP I and II) reporting checklists (October 2021) within Web of Science and Scopus. Studies that engaged patients as research partners were eligible. Two independent reviewers screened full texts and extracted data from included studies using a standardized data abstraction form. Data pertaining to compensation methods (financial and non-financial) and reported barriers and enablers to financially compensating patient partners were extracted. No formal quality assessment was conducted since the aim of the review is to describe the scope of patient partner compensation. Quantitative data were presented descriptively, and qualitative data were thematically analysed. RESULTS: The search identified 843 studies of which 316 studies were eligible. Of the 316 studies, 91% (n = 288) reported offering a type of compensation to patient partners. The most common method of non-financial compensation reported was informal acknowledgement on research outputs (65%, n = 206) and co-authorship (49%, n = 156). Seventy-nine studies (25%) reported offering financial compensation (i.e., honoraria, salary), 32 (10%) reported offering no financial compensation, and 205 (65%) studies did not report on financial compensation. Two key barriers were lack of funding to support compensation and absence of institutional policy or guidance. Two frequently reported enablers were considering financial compensation when developing the project budget and adequate project funding. CONCLUSIONS: In a cohort of published studies reporting patient engagement in research, most offered non-financial methods of compensation to patient partners. Researchers may need guidance and support to overcome barriers to offering financial compensation.

The term patient engagement in research is used to describe research that is conducted "with" patients, rather than "on" patients. It is important that researchers recognize patient partners for their time and expertise. In order to gain a better understanding of approaches to recognition for patient partners we reviewed published studies to: (1) assess how often financial compensation is reported, (2) identify how patient partners are reported as being compensated, and (3) understand what benefits, challenges, barriers and enablers might exist to offering financial compensation. We conducted a systematic review of articles citing the Guidance for Reporting the Involvement of Patients and the Public (GRIPP) guidelines. We included all study designs if patients were engaged as partners. Studies in which patients were participants only were excluded. Data collected included information about details of patient partner compensation (financial and non-financial practices) as well as challenges relating to financial compensation. Numerical data were analysed descriptively. Textual data were coded by two reviewers and collated into overarching themes. Our search identified 316 papers. Of these, 91% reported offering compensation to patient partners. Most common methods were acknowledgement (65%) and co-authorship (49%). Only 79 studies (25%) reported offering financial compensation to patient partners. Limited funding and lack of institutional guidance were identified as two key barriers that may be preventing researchers from offering financial compensation. Our review found that non-financial methods of compensation are reported more often than financial compensation. Researchers may require more support when offering financial compensation to patient partners.

Assessing the impact of predatory journals on policy and guidance documents: a cross-sectional study protocol.

INTRODUCTION: Many predatory journals fail to follow best publication practices. Studies assessing the impact of predatory journals have focused on how these articles are cited in reputable academic journals. However, it is possible that research from predatory journals is cited beyond the academic literature in policy documents and guidelines. Given that research used to inform public policy or government guidelines has the potential for widespread impact, we will examine whether predatory journals have penetrated public policy. METHODS AND ANALYSIS: This is a descriptive study with no hypothesis testing. Policy documents that cite work from the known predatory publisher OMICS will be downloaded from the Overton database. Overton collects policy documents from over 1200 sources worldwide. Policy documents will be evaluated to determine how the predatory journal article is used. We will also extract epidemiological details of the policy documents, including: who funded their development, the discipline the work is relevant to and the name of the organisations producing the policy. The record of scholarly citations of the identified predatory articles will also be examined. Findings will be reported with descriptive statistics using counts and percentages. ETHICS AND DISSEMINATION: No ethical approval was required for this study since it does not involve human or animal research. Study findings will be discussed at workshops on journalology and predatory publishing and will be disseminated through preprint, peer-reviewed literature and conference presentations.