The patient advisor, an organizational resource as a lever for an enhanced oncology patient experience (PAROLE-onco): a longitudinal multiple case study protocol

Abstract

Background Quebec is one of the Canadian provinces with the highest rates of cancer incidence and prevalence. A study by the Rossy Cancer Network (RCN) of McGill university assessed six aspects of the patient experience among cancer patients and found that emotional support is the aspect most lacking. To improve this support, trained patient advisors (PAs) can be included as full-fledged members of the healthcare team, given that PA can rely on their knowledge with experiencing the disease and from using health and social care services to accompany cancer patients, they could help to round out the health and social care services offer in oncology. However, the feasibility of integrating PAs in clinical oncology teams has not been studied. In this multisite study, we will explore how to integrate PAs in clinical oncology teams and, under what conditions this can be successfully done. We aim to better understand effects of this PA intervention on patients, on the PAs themselves, the health and social care team, the administrators, and on the organization of services and to identify associated ethical and legal issues. Methods/design We will conduct six mixed methods longitudinal case studies. Qualitative data will be used to study the integration of the PAs into clinical oncology teams and to identify the factors that are facilitators and inhibitors of the process, the associated ethical and legal issues, and the challenges that the PAs experience. Quantitative data will be used to assess effects on patients, PAs and team members, if any, of the PA intervention. The results will be used to support oncology programs in the integration of PAs into their healthcare teams and to design a future randomized pragmatic trial to evaluate the impact of PAs as full-fledged members of clinical oncology teams on cancer patients’ experience of emotional support throughout their care trajectory. Discussion This study will be the first to integrate PAs as full-fledged members of the clinical oncology team and to assess possible clinical and organizational level effects. Given the unique role of PAs, this study will complement the body of research on peer support and patient navigation. An additional innovative aspect of this study will be consideration of the ethical and legal issues at stake and how to address them in the health care organizations.

“I Want to Help Others Like Me”: A Pilot Qualitative Study on Patients’ Participation in a Screening for Distress Program

“…For instance, patients-as-partners felt the medical jargon and administrative complexities (eg, steps to be taken in the institution before launching a program in clinic settings, or what healthcare professionals to include in the implementation process) were difficult to understand. Although the body of research on peer support and patient navigation exists in cancer care (25), little data has explored some barriers of patients' involvement in QI project (22) or ethical issues regarding their participation (30), even less in psychosocial oncology care. Our results present a new perspective on some barriers perceived by the patients-as-partners when involved in this QI project in psychosocial oncology care.…”

Type 2 diabetes peer support interventions as a complement to primary care settings in high-income nations: A scoping review

“…Trained peer supporters, known as accompanying patients, could be called upon to assist the patient in making informed decisions and in the development of their self-care competency (11,12). In order to further harness the potential role of trained peer supporters within the healthcare organizations, Pomey et al (2021) recently developed a significant research protocol to mark the collaboration with six health care organizations in Québec in order to study the uncommon integration of trained peer supporters, known as patient advisors, as full-fledged members of the oncology health care team (13).…”

Building Resilient Coalitions: Health and Medical Response Through Covid-19 Concurrent Events

“…Surveys, originally collected in Excel, were inputted into QDA Miner [35] -qualitative data analysis software -to enable classical constant comparison analysis [36], [37]. QDA Miner has been used for qualitative analyses both in disaster studies and healthcare [38]- [40] and it allows for categorization and codification of data into thematic units which in our study occurred a posteriori (identification and categorization of codes followed data-driven analysis and included assessing frequency, salience, distribution, and commonality among others). Further, the software offers functionality to split codes, rename codes, merge codes, subcategorize codes, all of which are effective means for ensuring consistency and integrity when managing a robust corpus of qualitative data.…”