Background: Currently, the specific role of family physicians (fps) in the care of people with cancer is not well defined. Our goal was to explore physician perspectives and contextual factors related to the coordination of cancer care and the role of fps. Methods: Using a constructivist grounded theory approach, we conducted telephone interviews with 58 primary and cancer specialist health care providers from across Canada. Results: The participants—21 fps, 15 surgeons, 12 medical oncologists, 6 radiation oncologists, and 4 general practitioners in oncology—were asked to describe both the role that fps currently play and the role that, in their opinion, fps should play in the future care of cancer patients across the cancer continuum. Participants identified 3 key roles: coordinating cancer care, managing comorbidities, and providing psychosocial care to patients and their families. However, fps and specialists discussed many challenges that prevent fps from fully performing those roles: (1) The fps described communication problems resulting from not being kept “in the loop” because they weren’t copied on patient reports and also the lack of clearly defined roles for all the various health care providers involved in providing care to cancer patients. (2) The specialists expressed concerns about a lack of patient access to fp care, leaving specialists to fill the care gaps. The fps and specialists both recommended additional training and education for fps in survivorship care, cancer screening, genetic testing, and new cancer treatments. Conclusions: Better communication, more collaboration, and further education are needed to enhance the role of fps in the care of cancer patients.
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.
After treatment, cancer survivors require ongoing, comprehensive care to improve quality of life, reduce disability, limit complications, and restore function. In Canada and internationally, follow-up care continues to be delivered most often by oncologists in institution-based settings. There is extensive evidence to demonstrate that this model of care does not work well for many survivors or our cancer systems. Randomized controlled trials have clearly demonstrated that alternate approaches to follow-up care are equivalent to oncologist-led follow-up in terms of patient outcomes, such as recurrence, survival, and quality of life in a number of common cancers. In this paper, we discuss the state of follow-up care for survivors of prevalent cancers and the need for more personalized models of follow-up. Indeed, there is no one-size-fits-all solution to post-treatment follow-up care, and more personalized approaches to follow-up that are based on individual risks and needs after cancer treatment are warranted. Canada lags behind when it comes to personalizing follow-up care for cancer survivors. There are many reasons for this, including difficulty in determining who is best served by different follow-up pathways, a paucity of evidence-informed self-management education and supports for most survivors, poorly developed IT solutions and systems, and uneven coordination of care. Using implementation science theories, approaches, and methods may help in addressing these challenges and delineating what might work best in particular settings and circumstances.
RRH: Rural and Remote Health. Published article number: 1141 - The challenges and rewards of rural family practice in New Brunswick, Canada: lessons for retention