Patient Engagement in Health Research: Perspectives from Patient Participants.

BACKGROUND AND PURPOSE: Over the past decade, patient engagement (PE) has emerged as an important way to help improve the relevance, quality, and impact of health research. However, there is limited consensus on how best to meaningfully engage patients in the research process. The goal of this article is to share our experiences and insights as members of a Patient Advisory Committee (PAC) on a large, multidisciplinary cancer research study that has spanned six years. We hope by sharing our reflections of the PAC experiences, we can highlight successes, challenges, and lessons learned to help guide PE in future health research. To the best of our knowledge, few publications describing PE experiences in health research teams have been written by patients, survivors, or family caregivers themselves. METHODS: A qualitative approach was used to gather reflections from members of the Patient Advisory Committee regarding their experiences in participating in a research study over six years. Each member completed an online survey and engaged in a group discussion based on the emergent themes from the survey responses. RESULTS: Our reflections about experiences as a PAC on a large, pan-Canadian research study include three overarching topics (1) what worked well; (2) areas for improvement; and (3) reflections on our overall contribution and impact. Overall, we found the experience positive and experienced personal satisfaction but there were areas where future improvements could be made. These areas include earlier engagement and training in the research process, more frequent communication between the patient committee and the research team, and on-going monitoring regarding the nature of the patient engagement. CONCLUSIONS: Engaging individuals who have experienced the types of events which are the focus of a research study can contribute to the overall relevance of the project. However, intentional efforts are necessary to ensure satisfactory involvement.

Every Story Is Different: Experiences With Body Changes Related to Cancer.

One of the important aspects of stakeholder engagement in cancer care and system planning is hearing from individuals who have been diagnosed with cancer about the impact of the diagnosis and treatment on their lives. Hearing stories from the perspectives of cancer survivors offers opportunity to gain new insight and understanding about experiences of being diagnosed and treated for cancer. This article presents ten short narratives about survivors' perspectives on body image and cancer. Each story is unique but, taken together, the picture they create is one of facing challenges, discovering personal resilience, and moving forward to engage in living. The stories emphasize the importance of communication and support from healthcare providers and understanding needs for a person-centered cancer care system.