No abstract

Context Patient engagement in research consists in involving patients as partners across the research cycle. This practice has quickly become an international standard, with funding bodies actively encouraging it. As the increased incentive to engage patients can lead to tokenistic partnerships, it is important to consider the experiences of patient-partners. Objective To synthesize the qualitative literature on the experience of patients as partners in research. Design A systematic review of the literature with thematic synthesis was realized, guided by the framework developed by Thomas and Harden (Bmc Med Res Methodol 8: 45, 2008). Data collection A search strategy was developed to encompass keywords relating to patient-partners in research, their experience, and the qualitative nature of the target studies. 10 databases were searched using the EBSCO-host engine, along with the Scopus engine to include EMBASE. The search results were screened for the following inclusion criteria: articles written in English; articles reporting on the experience of patient-partners in research; qualitative studies or mixed-methods studies with a distinct qualitative section. Analysis Included articles were charted for general information. The CASP qualitative checklist was used for critical appraisal. The “results” section of each article was coded line by line. Codes were aggregated inductively to form descriptive themes and analytical themes, in order to synthesize the ideas found in the selection of articles. Results The initial search yielded 10,222 results. After the removal of duplicates, 5534 titles and abstracts were screened, 88 full-text reports were evaluated, and 41 studies were included. Articles reporting on these studies were published between 2005 and 2020. Seven themes emerged from the analysis: “motivations to engage in research”, “activities in patient engagement”, “structure”, “competence”, “team dynamics”, “impacts on broader life”, and “illness”. Articles reported varying degrees of perceived impact on research and satisfaction concerning the level of engagement. The importance of power differentials and team dynamics were widely stated. Conclusions Findings provide an in-depth view of the experiences of patient-partners in research. Most articles reported a generally positive experience, but challenges and pitfalls of patient engagement were identified. This will serve research teams by highlighting good practices and possible improvements.

No abstract

IntroductionThe COVID-19 pandemic has major collateral impacts on mental health. Gambling is among the major public health issues that seems to have been transformed by the pandemic. In the province of Quebec in Canada, gambling is an important leisure activity. About two out of three adults are in Quebec gamble. The objective of this study is to draw a portrait of the impacts of the COVID-19 pandemic on gamblers and to learn more about their experiences during the pandemic in the province of Quebec.Method and analysisThis study has a sequential explanatory mixed-method design in two phases. The first phase is a cross-sectional online survey with Quebec residents who are 18 years of age or older and have gambled at least once in the previous 12 months. The second phase will be a qualitative study. Semistructured interviews will be conducted with gamblers, family members, addiction counsellors and state representatives selected through purposing sampling.Ethics and disseminationThis study is one of the first mixed-methods studies on the impacts of the COVID-19 pandemic on gambling. This study will generate new scientific knowledge on a worrisome public health issue, that is, gambling, and provide a better understanding of the experiences and gambling behaviours of gamblers during the pandemic. This study is funded by the Ministry of Health and Social Services of the Government of Quebec and was approved on 27 October 2020 by the Scientific and Research Ethics Committee of the CIUSSS de l’Estrie-CHUS. This is a 2-year study that will be completed in June 2022.

Context Implicating patients in research is gaining popularity around the world and is now the reference of many funding agencies. Understanding these partnerships is necessary to grasp this new reality. The experiences of researchers who have involved patient-partners (PPs) in health research are important for a better understanding of these practices. Objective This study aimed to identify and analyze the existing qualitative scientific literature on the experiences of academic researchers involved in health research with patient engagement (PE). Design A scoping review of the available literature with an inductive thematic synthesis, guided by the methodological framework of Arksey and O’Malley. Data collection A search strategy was developed to include keywords relating to researchers, patient-partners, experiences, and the qualitative methodologies of the targeted studies. Five databases were searched using the EBSCO-host engine. The search results were screened by four reviewers to only include articles written in English on the topic of the experience of academic researchers having worked with PPs in health research based on qualitative studies or mixed-methods studies with a distinct qualitative section. Analysis Articles included were charted for general information. All “results” sections were coded line by line. These codes were organized inductively to form descriptive and analytical themes. This led to the synthesis of the ideas found in the selected articles. Results The search strategy yielded 7616 results, of which 2468 duplicates were removed. The remaining 5148 articles were screened, resulting in the exclusion of 5114 off-topic studies. The remaining 29 full-text articles were evaluated for inclusion from which 5 additional studies were identified. The final selection consisted of 11 articles that met all the criteria. These articles were published between 2009 and 2019. Five general themes inductively emerged from the analysis: the understanding of PE, motivations, contexts, attitudes, and practical aspects of PE that are central to researchers. Conclusion This scoping review provides a better understanding of the experiences of researchers who have implemented patient partnerships in health research projects. Our findings reveal many positive elements central to health researchers’ discourses about PE, but they provide insights into the challenges and postures of resistance. This knowledge can support the development of empirically sound improvements in PE practices.