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

• Main Authors: M. P. Pomey, M. de Guise, M. Desforges, K. Bouchard, C. Vialaron, L. Normandin, M. Iliescu-Nelea, I. Fortin, I. Ganache, C. Régis, Z. Rosberger, D. Charpentier, L. Bélanger, M. Dorval, D. P. Ghadiri, M. Lavoie-Tremblay, A. Boivin, J. F. Pelletier, N. Fernandez, A. M. Danino
• Format: Article
• Language: English
• Published: BMC 2021-01-01
• Series: BMC Health Services Research
• Subjects: Patient advisor; Oncology; Co-construction; Patient care experience; Patient partnership; Longitudinal case study
• Online Access: https://doi.org/10.1186/s12913-020-06009-4

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.