Patient engagement in research; benefits, challenges, importance, and implications

Objective Patient engagement (PE) and patient-oriented research have begun to reshape the thought process behind conducting research with the aim of maximizing the relevance of findings for patients. This study aimed to examine the perceived benefits, challenges, importance, and implications of patient engagement from the perspectives of sarcoma patient advisors and researchers. Methods This study utilized a mixed model design. Qualitative data was collected through two focus group discussions with sarcoma patients. Quantitative data was collected via a survey containing Likert scale questions completed by the Centre for Evidence-Based Orthopaedics Musculoskeletal Oncology research team at McMaster University. Results Results showed that patients value the opportunity to contribute to research and support future patients. Being a patient advisor also creates a sense of community and fosters support through building connections and communicating with other patients. Members of the research team noted that patient engagement is important for the study of patient relevant topics and provides insight into the improvement of patient care. However, an added challenge is the lack of current guidance surrounding the implementation of patient engagement. Conclusion These findings emphasize the potential value of patient engagement while also highlighting the need for further research into best practices for the implementation of patient engagement efforts. Overall, patient engagement is an essential area in need of further exploration to enhance future research and clinical trials. ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement This study did not receive any funding ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: The Hamilton Integrated Research Ethics Board gave ethical approval for this work. I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes All data produced in the present study are available upon reasonable request to the authors