The black box of the relationship between breast cancer patients and accompanying patients: the accompanied patients' point of view.

BACKGROUND: The PAROLE-Onco program was introduced in the province of Quebec, Canada in 2019. It integrates accompanying patients (APs), i.e., people who have been affected by cancer, into the clinical team as full members. These APs use their experiential knowledge with people undergoing treatment and with clinical teams. The aim of this paper is to evaluate, within the framework of two university medical centers, the perceptions of breast cancer patients who receive support from APs, particularly in terms of their active involvement in their care trajectory. METHODS: A qualitative study based on semi-structured interviews with accompanied patients was performed. Fourteen individual interviews were conducted between July and September 2021 with women presenting different profiles in terms of age, education, professional status, type of treatment, family situation, and clinical background. The data were analyzed using thematic analysis, focusing on patients' perceptions of APs' contributions and suggested improvements for accessing AP support. RESULTS: Three themes emerged from the semi-structured interviews: communication modalities used to connect patients with their APs, the characteristics of the support provided by APs, and the perceived effects of this support on the patients. Patients expressed a preference for telephone communication, highlighting its convenience and accessibility. The support provided by APs included emotional and informational support, neutrality, and adaptability. This relationship improved patient communication, reduced anxiety, helped regain control, and enhanced overall quality of life. The results emphasized the added value of APs in complementing the support offered by healthcare professionals. Patients noted the critical role of APs in helping them navigate the healthcare system, better understand their treatment processes, and manage their emotions. The ability of APs to provide practical advice and emotional reassurance was particularly valued. Overall, the findings underscored the significant impact of AP support on patients' experiences and highlighted areas for enhancing this service. CONCLUSION: This study highlights, during the care trajectory of people affected by breast cancer, APs' contribution to patients' emotional well-being because they improve, in particular, the management of emotions and communication with health professionals.

In 2019, we initiated the PAROLE-Onco program in Quebec, Canada, to support cancer patients by integrating Accompanying Patients (APs) into the medical team. These individuals, who have personally experienced cancer, join as full team members, sharing their insights with both patients and medical staff. Our study delved into the perceptions of breast cancer patients at two university hospitals regarding APs' involvement in their care trajectory. Through interviews with 14 women of diverse backgrounds and cancer experiences, we found that APs were instrumental in enhancing communication with doctors, facilitating the expression of challenging emotions, and aiding in treatment decisions. Patients valued the inclusion of APs in their care team and expressed gratitude for their support. Nonetheless, some encountered difficulties in reaching out to APs due to a lack of awareness or challenges involved in connecting. Overall, our research underscores the positive impact of involving APs in the care of breast cancer patients, and of enhancing emotional well-being and communication throughout the treatment journey.

Integrating accompanying patients into clinical oncology teams: limiting and facilitating factors.

OBJECTIVES: Since 2018, four establishments in Quebec have been instrumental in implementing the PAROLE-Onco program, which introduced accompanying patients (APs) into healthcare teams to improve cancer patients' experience. APs are patient advisors who have acquired specific experiential knowledge related to living with cancer, using services, and interacting with healthcare professionals. They are therefore in a unique and reliable position to be able to provide emotional, informational, cognitive and navigational support to patients who are dealing with cancer. We aimed to explore APs' perspectives regarding the limiting and facilitating factors in terms of how they are integrated into the clinical oncology teams. METHODS: A qualitative study based on semi-structured interviews and focus groups was conducted with 20 APs at the beginning of their intervention (T1) and, two years later, during a second data collection (T2). Limiting and facilitating factors of APs' integration into clinical teams were analyzed in terms of governance, culture, resources and tools. RESULTS: The limited factors raised by APs to be integrated into clinical teams include the following: confusion about the specific roles played by APs, lifting the egos of certain professionals who feel they are already doing what APs typically do, lack of identification of patient needs, absence of APs in project governance organizational boundaries, and team members' availability. Various communication challenges were also raised, resulting in the program being inadequately promoted among patients. Also mentioned as limiting factors were the lack of time, space and compensation. Creating opportunities for team members to meet with APs, building trust and teaching team members how APs' activities complement theirs were enhancing factors. Other facilitators include APs being involved in decision-making committees, being leaders in promoting the PAROLE-Onco program to patients and clinical team members and creating opportunities to communicate with team members to help enhance their work and provide feedback to improve patient services. Awareness of APs' added value for the team and patients is also a key facilitator. Regarding tools, offering accompanying services by telephone allows both patients and APs to benefit from the flexibility they need. CONCLUSION: Over time, APs were able to identify optimal factors for successful implementation. Recommendations include APs and professionals working in co-construction on organization, leadership, resources and status factors. This could help catalyze a change in culture within health establishments and allow people dealing with cancer to benefit from the experiential knowledge of other patients within their clinical team.

An exploratory cross-sectional study of the effects of ongoing relationships with accompanying patients on cancer care experience, self-efficacy, and psychological distress.

BACKGROUND: Centre hospitalier de l'Université de Montréal in Canada introduced accompanying patients (APs) into the breast cancer care trajectory. APs are patients who have been treated for breast cancer and have been integrated into the clinical team to expand the services offered to people affected by cancer. This study describes the profiles of the people who received the support and explores whether one-offs vs ongoing encounters with APs influence their experience of care, on self-efficacy in coping with cancer, and on their level of psychological distress. METHODS: An exploratory cross-sectional study was carried out among patients to compare patients who had one encounter with an AP (G1) with those who had had several encounters (G2). Five questionnaires were administered on socio-demographic characteristics, care pathway, evaluation of the support experience, self-efficacy in coping with cancer, and level of psychological distress. Logbooks, completed by the APs, determined the number of encounters. Linear regression models were used to evaluate the associations between the number of encounters, patient characteristics, care pathway, number of topics discussed, self-efficacy measures in coping with cancer, and level of psychological distress. RESULTS: Between April 2020 and December 2021, 60% of 535 patients who were offered support from an AP accepted. Of these, one hundred and twenty-four patients participated in the study. The study aimed to recruit a minimum of 70 patients with the expectation of obtaining at least 50 participants, assuming a response rate of 70%. There were no differences between G1 and G2 in terms of sociodemographic data and care pathways. Statistical differences were found between G1 and G2 for impacts on and the return to daily life (p = 0.000), the return to the work and impacts on professional life (p = 0.044), announcement of a diagnosis to family and friends (p = 0.033), and strategies for living with treatment under the best conditions (p = 0.000). Significant differences were found on the topics of cancer (p = 0.000), genetic testing (p = 0.023), therapeutic options (p = 0.000), fatigue following treatment (p = 0.005), pain and discomfort after treatment or surgery (p = 0.000), potential emotions and their management (p = 0.000) and the decision-making processes (p = 0.011). A significant relationship was found between the two groups for patients' ability to cope with cancer (p = 0.038), and their level of psychological distress at different stages of the care pathway (p = 0.024). CONCLUSIONS: This study shows differences between one-time and ongoing support for cancer patients. It highlights the potential for APs to help patients develop self-efficacy and cope with the challenges of cancer treatment.

Accompanying patients in clinical oncology teams: Reported activities and perceived effects.

INTRODUCTION: Since 2018, four establishments in Quebec, Canada, have decided to implement the PAROLE-Onco programme, which introduced accompanying patients (APs) in healthcare teams to improve the experience of cancer patients. APs are patient advisors who have had a cancer treatment experience and who conduct consultations to complement the service offered by providing emotional, informational and educational support to patients undergoing treatments (e.g., radiotherapy, chemotherapy, surgery), mostly for breast cancer. We aimed to explore the evolution of APs' perspectives regarding their activities within the clinical oncology teams as well as the perceived effects of their intervention with patients, the clinical team and themselves. METHODS: A qualitative study based on semistructured interviews and focus groups was conducted with APs at the beginning of their intervention (T1) and 2 years afterwards (T2). The themes discussed were APs' activities and the perceived effects of their interventions on themselves, on the patients and on the clinical team. RESULTS: In total, 20 APs were interviewed. In T2, APs' activities shifted from listening and sharing experiences to empowering patients by helping them become partners in their care and felt generally more integrated into the clinical team. APs help patients feel understood and supported, alleviate stress and become partners in the care they receive. They also alleviate the clinical team's workload by offering a complementary service through emotional support, which, according to them, helps patients feel calmer and more prepared for their appointments with healthcare professionals. They communicate additional information about their patients' health journey, which makes the appointment more efficient for healthcare professionals. When APs accompany patients, they feel as if they can make a difference in patients' lives. Their activities are perceived by some as an opportunity to give back but also as a way of giving meaning to their own experience, in turn serving as a learning experience. CONCLUSION: By mobilizing their experiential knowledge, APs provide emotional, informational, cognitive and navigational support, which allows patients to be more empowered in their care and which complements professionals' scientific knowledge, thereby helping to refine their sensitivity to the patients' experiences. PATIENT OR PUBLIC CONTRIBUTION: Two patient-researchers have contributed to the study design, the conduct of the study, the data analysis and interpretation, as well as in the preparation and writing of this manuscript.

Public Perspectives on Exposure Notification Apps: A Patient and Citizen Co-Designed Study.

Canada deployed a digital exposure notification app (COVID Alert) as a strategy to support manual contact tracing. Our aims are to (1) assess the use, knowledge, and concerns of the COVID Alert app, (2) identify predictors of app downloads, and (3) develop strategies to promote social acceptability. A 36-item questionnaire was co-designed by 12 citizens and patients partnered with 16 academic researchers and was distributed in the province of Québec, Canada, from May 27 to 28 June 2021. Of 959 respondents, 43% had downloaded the app. Messaging from government sources constituted the largest influence on app download. Infrequent social contacts and perceived app inefficacy were the main reasons not to download the app. Cybersecurity, data confidentiality, loss of privacy, and geolocation were the most frequent concerns. Nearly half of the respondents inaccurately believed that the app used geolocation. Most respondents supported citizen involvement in app development. The identified predictors for app uptake included nine characteristics. In conclusion, this project highlights four key themes on how to promote the social acceptability of such tools: (1) improved communication and explanation of key app characteristics, (2) design features that incentivize adoption, (3) inclusive socio-technical features, and (4) upstream public partnership in development and deployment.

Assessing the Quality of Direct-to-Consumer Teleconsultation Services in Canada.

The objective of this study was to describe and assess the quality of the direct-to-consumer medical teleconsultation landscape in three Canadian provinces. An environmental scan of primary care teleconsultation platforms was conducted in January 2022 to identify medical teleconsultation platforms in Quebec (Qc), Ontario, and British Columbia (BC). The quality of each teleconsultation platform was assessed using a modified version of the HONcode principles. Nineteen different direct-to-consumer medical teleconsultation platforms were identified across the three provinces. The quality of these teleconsultation platforms was very heterogeneous. The landscape of virtual primary care is changing rapidly in the Canadian ecosystem, and the transparency of current teleconsultation platforms could be improved.

Interprofessional collaboration and health policy: results from a Quebec mixed method legal research.

Interprofessional collaboration (IPC) is central to effective care. This practice is structured by an array of laws, regulations and policies but the literature on their impact on IPC is scarce. This study aims to illustrate the gap between the texts and clinicians' knowledge of the legal framework using an anonymous web-based survey. The survey, sent to nurses and physicians in Quebec, Canada, focused on the IPC legal framework, legal knowledge sources and IPC perceptions or beliefs. The primary outcome was to determine the gap between the law and understanding of the law. The secondary outcome was to identify legal knowledge sources for clinicians in Quebec. A total of 267 participants filled in the survey. For knowledge acquisition, 40% of physicians turned to insurers whereas 43% of nurses turned to their regulatory body. Only 30% of physicians correctly identified what activity is reserved for physicians while 39% of nurses correctly identified their reserved activity. Regarding legal perceptions, 28% of physicians and 39% of nurses thought IPC could increase their liability. These participants have a higher tendency to name liability-related issues as barriers to IPC. These results show an important discrepancy between clinicians' knowledge about law and policies, and the actual texts themselves. This gap can lead to misinterpretations of the law by clinicians, ineffective policy changes by policymakers and can perpetuate ineffective implementation of IPC.

Investigating the Barriers to Physician Adoption of an Artificial Intelligence- Based Decision Support System in Emergency Care: An Interpretative Qualitative Study.

The development of artificial intelligence (AI) systems to support diagnostic decision-making is rapidly expanding in health care. However, important challenges remain in executing algorithmic systems at the frontlines of clinical practice. Hence, most often, these systems have not been trained with local data nor do they fit with context-specific patterns of care. This research examines the implementation of an AI-based decision support system (DSS) in the emergency department of a large Academic Health Center (AHC) in Canada, focusing specifically on the question of end-user adoption. Based in an interpretative perspective, the study analyzes the perceptions of healthcare managers, AI developers, physicians and nurses on the DSS, so as to make sense of the main barriers to its adoption by emergency physicians. The study points to the importance of considering interconnections between technical, human and organizational factors to better grasp the unique challenges raised by AI systems in health care. It further emphasizes the need to investigate actors' perceptions of AI in order to develop strategies to adequately test and adapt AI systems, and ensure that they meet the needs of health professionals and patients. This research is particularly relevant at a time when considerable investments are being made to develop and deploy AI-based systems in health care. Empirically probing the conditions under which AI-based systems can effectively be integrated into processes and workflow is essential for maximizing the benefits these investments can bring to the organization and delivery of care.

Healthcare mediation and the need for apologies.

This article looks at the role apology plays in resolving conflicts between patients and doctors. Patients may have a manifest need for sincere expressions of sympathy, which may ultimately help unblock the conflict situation, and even lead to better reparations for the harm done. Moreover, some factors in the current context mean that patients have a very hard time getting apologies. The authors explore mediation as a conflict management mode that is more conducive to apology. Given that mediation still has some limitations in this respect, solutions are put forward to facilitate apology in mediation.