Researchers' experiences with patient engagement in health research: a scoping review and thematic synthesis.

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.

The practice of involving patients in research is gaining popularity around the world and is now the reference for many institutions and funding agencies. The individual experiences of researchers who have involved patient-partners in health research are essential for a better understanding of how these relationships unfold within research teams, and allows for identifying the challenges and best practices. This review's objective is to identify and analyze the existing scientific literature focused on the experiences of academic researchers involved in health research with patient engagement (PE). A close screen of 7616 search results yielded 11 scientific peer-reviewed articles corresponding to all inclusion criteria for further analysis. Five general themes emerged from the analysis: (1) the understanding of PE, (2) the motivations for PE, (3) the contexts of PE, (4) the attitudes toward PE, and (5) the practical aspects of PE that are central to health researchers. This analysis provides a novel summary of the current knowledge on the in-depth experiences of researchers who have implemented patient-partnerships in health research projects. Beyond many positive elements central to health researchers, our analysis also revealed the challenges and postures of resistance. Both positive and negative perspectives on PE help to draw a better understanding of these collaborations. This knowledge can support the development of empirically sound improvements in PE.

Resilience at Work among Healthcare Professionals in Oncology during and beyond the Pandemic: Report from A Deliberative Multi-Stakeholder Reflexive Symposium.

The chronic distress faced by healthcare professionals (HCPs) in oncology was exacerbated by the COVID-19 pandemic, heightening the need to improve their resilience. The Entretiens Jacques Cartier symposium provided an opportunity for participants from France and Quebec to share perspectives on resilience at work and discuss interventions at individual and organizational levels to support HCP health and well-being. Fifty-eight stakeholders were invited to the symposium, including HCPs, government decision-makers, researchers, and patient representatives. The symposium began with presentations on the nature of professional resilience at work in oncology and promising interventions developed in France and Quebec. Participants were then engaged in deliberation on how evidence and experiential knowledge could contribute to workplace strategies to strengthen resilience. Small-group reflexive sessions using the photovoice method, and an intersectoral roundtable, elicited the expression and deliberation of multiple perspectives on the nature and building blocks of resilience. Four main themes emerged from the discussions: (1) that resilience remains a muddy concept and can be associated pejoratively with "happycracy"; (2) that resilience must contend with bounded autonomy and captors; (3) that it relies on a sense of coherence at work; and (4) that patients play a role in improving HCP resilience. Stakeholders from healthcare systems in different countries view resilience at work as a means of equipping teams to handle chronic and punctual stresses in cancer care. The symposium emphasized the importance of better defining what resilience at work means and pursuing explorations of multicomponent interventions to support oncology HCPs and the patients they care for. The themes raised by participants at the symposium suggest pathways for furthering this exploration.

Implementation model for a national learning health system (IMPLEMENT-National LHS): a concept analysis and systematic review protocol.

INTRODUCTION: Despite efforts and repeated calls to improve the organisation and quality of healthcare and services, and in view of the many challenges facing health systems, the results and capacity to adapt and integrate innovations and new knowledge remain suboptimal. Learning health systems (LHS) may be an effective model to accelerate the application of research for real quality improvement in healthcare. However, while recognising the enormous potential of LHS, the literature suggests the model remains more of an aspiration than a reality. METHODS AND ANALYSIS: To reach a fine understanding of the implementation of the concepts involved in LHS, we will use a hybrid method which combines concept analyses with systematic review methodology. We will use a two-step analysis, a content analysis to analyse the definitions, uses and attributes of the concept and a systematic review to analyse the concept's implementation mechanisms. We will search eight databases and grey literature and present a broad synthesis of the available evidence regarding design, implementation and evaluation of LHS in a multilevel perspective. We will follow the latest Preferred Reporting Items for Systematic Review and Meta-Analysis statement for conducting and reporting a systematic review. Two reviewers will independently screen the titles and abstracts against the eligibility criteria followed by full-text screening of potentially relevant articles for final inclusion decision. Conflicts will be resolved with a senior author. We will include published primary studies that use qualitative, quantitative or mixed methods. The assessment of risk of bias will be made using the Mixed-Methods Appraisal Tool. ETHICS AND DISSEMINATION: This systematic review is exempt from ethics approval. The results formulated will highlight evidence-based interventions that support the implementation of a national LHS. They will be of particular interest to decision makers, researchers, managers, clinicians and patients allowing finally to implement the promising proposal of LHSs at national scale. PROSPERO REGISTRATION NUMBER: CRD42023393565.

The experience of patient partners in research: a qualitative systematic review and thematic synthesis.

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.

Patient engagement is the practice of involving patients as partners in research teams. Through these partnerships, patients become co-researchers, which promotes patient-centered research. In recent years, this practice has quickly gained popularity and is now encouraged by scientific funding bodies. This financial incentive to engage patients helps to promote the practice but can lead to tokenistic partnerships. Therefore, it is important to understand how patient-partners experience engagement in research.This systematic review aimed to describe the experience of patient-partners in research by synthesizing existing studies on the subject. 41 relevant studies were found, which described seven general themes in patient-partners' experience. These themes were "motivations to engage in research", "activities in patient engagement", "structure", "competence", "team dynamics", "impacts on broader life", and "illness". Within these themes, many positive experiences were described, such as the stimulating intellectual challenges of research, or the pride of helping others. Negative experiences were also identified, such as when patient-partners felt inadequately prepared for research activities, or when hierarchies of powers were formed. These findings will allow future research teams to improve patient engagement and will hopefully lead to better experiences for patient-partners.

Patient-partner engagement at the Centre de recherche du CHUS in the Province of Québec, Canada: from an intuitive methodology to outreach after three years of implementation.

BACKGROUND: Medical societies and funding agencies strongly recommend that patients be included as partners in research publications and grant applications. Although this "top-down" approach is certainly efficient at forcing this new and desirable type of collaboration, our past experience demonstrated that it often results in an ambiguous relationship as not yet well integrated into the cultures of either patients' or the researchers'. The question our group raised from this observation was: "How to generate a cultural shift toward a fruitful and long-lasting collaboration between patients and researchers? A "bottom-up" approach was key to our stakeholders. The overall objective was to build a trusting and bidirectional-ecosystem between patients and researchers. The specific objectives were to document: 1) the steps that led to the development of the first patient-partner strategic committee within a research center in the Province of Québec; 2) the committee's achievements after 3 years. METHODS: Eighteen volunteer members, 12 patient-partners and 6 clinician/institutional representatives, were invited to represent the six research themes of the Centre de recherche du CHU de Sherbrooke (CRCHUS) (Quebec, Canada). Information on the services offered by Committee was disseminated internally and to external partners. Committee members satisfaction was evaluated. RESULTS: From May 2017 to April 2020, members attended 29 scheduled and 6 ad hoc meetings and contributed to activities requiring over 1000 h of volunteer time in 2018-2019 and 1907 h in the 2019-2020 period. The Committee's implication spanned governance, expertise, and knowledge transfer in research. Participation in these activities increased annually at local, provincial, national and international levels. The Patient-Partner Committee collaborated with various local (n = 7), provincial (n = 6) and national (n = 4) partners. Member satisfaction with the Committee's mandate and format was 100%. CONCLUSIONS: The CRCHUS co-constructed a Patient-Partner Strategic Committee which resulted in meaningful bilateral, trusting and fruitful collaborations between patients, researchers and partners. The "bottom-up" approach - envisioned and implemented by the Committee, where the expertise and the needs of patients complemented those of researchers, foundations, networks and decision-makers - is key to the success of a cultural shift. The CRCHUS Committee created a hub to develop the relevant intrinsic potential aimed at changing the socio-cultural environment of science.