BACKGROUND: There is a growing role for patients, family members and caregivers as consultants, collaborators and partners in health system settings in Canada. However, compensation for this role is not systematized. When offered, it varies in both type (e.g., one-time honorarium, salary) and amount. Further, broad-based views of patient partners on compensation are still unknown. We aimed to describe the types and frequency of compensation patient partners have been offered and their attitudes towards compensation.
METHODS: This study uses data from the Canadian Patient Partner Study (CPPS) survey. The survey gathered the experiences and perspectives of those who self-identified as patient partners working across the Canadian health system. Three questions were about compensation, asking what types of compensation participants had been offered, if they had ever refused compensation, and whether they felt adequately compensated. The latter two questions included open-text comments in addition to menu-based and scaled response options. Basic frequencies were performed for all questions and open-text comments were analyzed through inductive qualitative content analysis.
RESULTS: A total of 603 individuals participated in the CPPS survey. Most respondents were never or rarely offered salary (81%), honorarium (64%), gift cards (80%) or material gifts (93%) while half were offered conference registration and expenses at least sometimes. A total of 129 (26%) of 499 respondents reported refusing compensation. Of 511 respondents, half felt adequately compensated always or often, and half only sometimes, rarely or never. Open-text comments revealed positive, ambivalent and negative attitudes towards compensation. Attitudes were framed by perceptions about their role, sentiments of giving back to the health system, feelings of acknowledgement, practical considerations, values of fairness and equity and accountability relationships.
CONCLUSIONS: Our findings confirm that compensation is not standardized in Canada. Half of survey respondents routinely feel inadequately compensated. Patient partners have diverse views of what constitutes adequate compensation inclusive of personal considerations such as a preference for volunteering, and broader concerns such as promoting equity in patient partnership. Organizations should attempt to ensure that compensation practices are clear, transparent and attentive to patient partners\' unique contexts.
UNASSIGNED: Two patient partners are members of the CPPS research team and have been fully engaged in all study phases from project conception to knowledge translation. They are co-authors of this manuscript. The survey was co-designed and pilot tested with patient partners and survey participants were patient partners.

The Impact program aims to structure the care provided by advanced practice nurses (APNs) for people with chronic illnesses, based on the humanistic health partnership model. This model, based on patient partnership, is enriched by measurement tools that take into account four determinants of adaptation to chronic illness. Impact aims to improve patient partnership, individualize care and integrate IPAs into a research dynamic.

BACKGROUND: Cancer is regarded as a major worldwide burden. Patient distress has been linked to disease progression. Studies show that engagement strategies affect clinical decision-making and patient outcomes. The optimal engagement method is a partnership that integrates the patient\'s expertise into the comprehensive co-design of the healthcare system.
OBJECTIVE: This is the first study to investigate cancer patient-as-partner experience and its impact on distress levels, decision-making and self-management.
METHODS: It is a quantitative and quasi-experimental study that adopted a partnership committee at a Lebanese hospital. A stratified random sampling approach was used, and data were collected by self-administered questionnaires. We utilized the standardized distress thermometer and PPEET.
RESULTS: We recruited 100 patient partners. Cancer patients-as-partners had optimal engagement experience in QI projects (mean = 4; SD = 0.4). The main partnership benefit was improved hospitalization experience (49%). Almost half of PP reported no challenges faced (49%). Recommendations for improvement were training (19%), team dynamics management (12%) and proper time allocation (7%). The distress level post-partnership was significantly reduced (t = 12.57, p < 0.0001). This study highlights the importance of partnership and ‎its ability to influence shared decision-making preference [χ2(2) = 13.81, p = 0.025] and self-management practices [F(3, 11.87) = 7.294, p = 0.005].
CONCLUSIONS: Research findings suggest that partners from disadvantaged groups can have optimal partnership experience. A partnership model of care can shape the healthcare system into a people-oriented culture. Further research is needed to explore diverse PP engagement methodologies and their effect on organizational development.
UNASSIGNED: Patients and family members were engaged in the co-design of the study methodology, especially the modification of a research instrument. Patient partners with lived experience were involved in the patient partnership committee as core members to improve healthcare system design and evaluation.

Invalidation from healthcare practitioners is an experience shared by many patients, especially those marginalized or living with contested conditions (e.g., chronic pain, fibromyalgia, etc.). Invalidation can include not taking someone\'s testimony seriously, imposing one\'s thoughts, discrediting someone\'s emotions, or not perceiving someone\'s testimony as equal and competent. Epistemic injustices, that is, the disqualification of a person as a knower, are a form of invalidation. Epistemic injustices have been used as a theoretical framework to understand invalidation that occurs in the patient-healthcare provider relationship. However, to date, the different recommendations to achieve epistemic justice have not been listed, analyzed, nor compared yet. This paper aims at better understanding the state of the literature and to critically review possible avenues to achieve epistemic justice in healthcare. A systematic and critical review of the existing literature on epistemic justice was conducted. The search in four databases identified 629 articles, from which 35 were included in the review. Strategies to promote epistemic justice that can be applied to healthcare are mapped in the literature and sorted in six different approaches to epistemic justice, including virtuous, structural, narrative, cognitive, and partnership approaches, as well as resistance strategies. These strategies are critically appraised. A patient partnership approach based on the Montreal Model, implemented at all levels of healthcare systems, seems promising to promote epistemic justice in healthcare.

Introducing patient partnership in mental health and psychiatry to initial training is an innovative way of promoting recovery, while at the same time highlighting the undeniable contribution of peer support within healthcare teams, in order to accompany the people concerned. This is why Croix-Rouge Compétence Auvergne-Rhône-Alpes is developing a specific training program for trainees.

OBJECTIVE: Many health professions education programs involve people with lived experience as expert speakers. Such presentations may help learners better understand the realities of living with chronic illness or experiencing an acute health problem. However, lectures from only one or a small number of people may not adequately illustrate the perspectives and experiences of a diverse patient cohort. Additionally, logistical constraints such as public health restrictions or travel barriers may impede in-person presentations, particularly among people who have more restrictions on their time. Health professions education programs may benefit from understanding the potential effects of online patient-led presentations with a diverse set of speakers. We aimed to explore whether patient-led online learning modules about diabetes care would influence learners\' responses to clinical scenarios and to collect learners\' feedback about the modules.
METHODS: This within-subjects randomized experiment involved 26 third-year medical students at Université Laval in Quebec, Canada. Participation in the experiment was an optional component within a required course. Prior to the intervention, participating learners responded to three clinical scenarios randomly selected from a set of six such scenarios. Each participant responded to the other three scenarios after the intervention. The intervention consisted of patient-led online learning modules incorporating segments of narratives from 21 patient partners (11 racialized or Indigenous) describing why and how clinicians could provide patient-centered care. Working with clinical teachers and psychometric experts, we developed a scoring grid based on the biopsychosocial model and set 0.6 as a passing score. Independent evaluators, blinded to whether each response was collected before or after the intervention, then scored learners\' responses to scenarios using the grid. We used Fisher\'s Exact test to compare proportions of passing scores before and after the intervention.
RESULTS: Learners\' overall percentage of passing scores prior to the intervention was 66%. Following the intervention, the percentage of passing scores was 76% (p = 0.002). Overall, learners expressed appreciation and other positive feedback regarding the patient-led online learning modules.
CONCLUSIONS: Findings from this experiment suggest that learners can learn to provide better patient-centered care by watching patient-led online learning modules created in collaboration with a diversity of patient partners.

BACKGROUND: Owing to their low prevalence, rare diseases are poorly addressed in the scientific literature and clinical practice guidelines. Thus, health care workers are inadequately equipped to provide timely diagnoses, appropriate treatment, and support for these poorly understood conditions. These clinical tribulations are experienced as moral challenges by patients, jeopardizing their life trajectories, dreams, and aspirations.
OBJECTIVE: This paper presents an ethical action plan for rare disease care and the process underlying its development.
METHODS: This action plan was designed through an ethical inquiry conducted by the Ethics and Rare Diseases Working Group, which included 3 patient partners, 2 clinician researchers, and 1 representative from Québec\'s rare disease association.
RESULTS: The plan is structured into 4 components. Component A presents the key moral challenges encountered by patients, which are the lack of knowledge on rare diseases among health care workers, the problematic attitudes that it sometimes elicits, and the distress and powerlessness experienced by patients. Component B emphasizes a vision for patient partnership in rare disease care characterized by open-mindedness, empathy, respect, and support of patient autonomy from health care workers. Component C outlines 2 courses of action prompted by this vision: raising awareness among health care workers and empowering patients to better navigate their care. Component D compares several interventions that could help integrate these 2 courses of action in rare disease care.
CONCLUSIONS: Overall, this action plan represents a toolbox that provides a review of multiple possible interventions for policy makers, hospital managers, practitioners, researchers, and patient associations to critically reflect on key moral challenges experienced by patients with rare diseases and ways to mitigate them. This paper also prompts reflection on the values underlying rare disease care, patient experiences, and health care workers\' beliefs and behaviors. Health care workers and patients were the primary beneficiaries of this action plan.

The clinical characteristics of people with autism spectrum disorders can make it difficult for them to access care, including treatment and medical imaging examinations. Simulation-based learning can facilitate the performance of a CT scan, as in the case of Irène, who was able to adopt the expected body positions thanks to this intervention.

Introduction: Support groups in neonatal intensive care units (NICUs) are beneficial to parents. The usefulness of prenatal support groups for prospective parents who will have a newborn requiring admission to the NICU has never been investigated. Methods: We assessed the needs of NICU parents regarding topics they would have wished to discuss prenatally and developed the content of a prenatal support workshop. A standardized survey prospectively evaluated the perspectives of pregnant women admitted to a high-risk pregnancy unit who participated in the resulting workshops. Results: During needs assessment, 295 parents invoked themes they would have wished to discuss antenatally: parental guilt, future parental role, normalizing their experience/emotions, coping with many losses, adapting to their new reality, control and trust, information about the NICU, technology around the baby, common neonatal interventions, the NICU clinical team, and the role of parents in the team. These findings were used to develop the workshop, including a moderator checklist and a visual presentation. Practical aspects of the meetings were tested/finalized during a pre-pilot phase. Among 21 pregnant women who answered the survey (average gestational age 29.3 weeks), all agreed that the workshop was useful, that it made them feel less lonely (95%), that exchanges with other women were beneficial (95%) and gave them a certain amount of control over their situation (89%). All answers to open-ended questions were positive. Conclusion: Prenatal educational/support workshops provide a unique and useful means to support future NICU parents. Future investigations will explore whether these prenatal interventions improve clinical outcomes.

To assess the contribution of interprofessional education (IPE) for pre-graduate students from eight study branches. These seminars had patient-partners and caregivers as co-facilitators for reflexive conversations, with educational goals of learning interprofessional communication and involving patients in decision-making.
A pre/post seminar comparison with 2 questionnaires about the students\' professional identity, multidisciplinary collaboration and patients\' involvement, and the richness of stakeholders\' definitions.
1142 students participated in the course (n = 740 after removing missing data). The results indicate that this type of education helps students feel more confident in their ability to communicate and collaborate (z = -10,204; p < 0,001), involves patients in their care plan (z = -7,996; p < 0,001) and fosters the competence and autonomy of the post-graduate students in their own professional field (z = -10,627; p < 0,001). It also enriches the definition of patients\' roles (n = 399; z = -17,276; p < 0,001).
Including patients-partners and caregivers in IPE enriches the professional identity and increases the self-efficacy of futures caregivers.
This program exposed students to collaborative care practices, can reduce their resistance to this type of practice after graduation by making them more confident in using a structured team approach and recognising its benefits for both patients and caregivers.