UNASSIGNED: Health advocacy (HA) involves purposeful actions to inform, mobilise, and organise activities to address social determinants of health affecting individuals or communities. It is a fundamental component of medical practice, deemed mandatory by professional and educational bodies. Therefore, including health advocacy training in pre- and post-graduate medical education is crucial.
UNASSIGNED: In this study, we aimed to determine the need for HA training for family physicians (FPs) based on expert opinions.
UNASSIGNED: We conducted a modified Delphi study with 105 academic experts and active FPs to explore HA training needs. Using a three-round technique, experts first answered five open-ended questions on HA competencies, teaching and assessment methods, learning environments, and integration in residency training. In the second round, statements from the responses were rated on a 5-point Likert scale, in the third round, statements below the 85% consensus level were revised and re-evaluated.
UNASSIGNED: The panel consisted of 41 experts (33 academicians, 8 practitioners) who accepted the invitation and completed the study. At the end of the three rounds, consensus was reached on 38 statements for HA competencies, 15 for teaching methods, 8 for assessment methods, and 20 for integration for HA training.
UNASSIGNED: Competencies for the HA role are very broad in perspective and show commonalities with the FPs\' \'professional\', \'expert\' and \'leader\' roles. Longitudinally integration of the HA training into the national \'Family Medicine Residency Training Core Curriculum\' through participatory processes and training of FM trainers in HA is strongly recommended.
The competencies expected for the health advocacy role of the family physicians show commonalities with the family physicians’ ‘professional’, ‘expert’ and ‘leader’ roles.It is important to longitudinally integrate health advocacy training into the family medicine residency training core curriculum at the national level.

OBJECTIVE: To evaluate whether patients are capable and willing to self-administer and interpret an EldonCard test to determine their Rh status.
METHODS: This was a cross-sectional study in Honolulu, HI, USA of pregnancy-capable people aged 14-50 years who did not know their blood type and had never used an EldonCard. Participants independently completed EldonCard testing, determined their Rh type and answered a survey on feasibility and acceptability. Separately, a blinded clinician recorded their interpretation of the participant\'s EldonCard. When available, we obtained blood type from the electronic health record (EHR). We measured Rh type agreement between participant, clinician and EHR, as well as participant comfort and acceptability of testing.
RESULTS: Of the 330 total participants, 288 (87.3%) completed testing. Patients and clinicians had 94.0% agreement in their interpretation of the EldonCard for Rh status. Patient interpretation had 83.5% agreement with EHR while clinician and EHR had 92.3% agreement. Sensitivity of EldonCard interpretation by patient and clinician was 100%. Specificity was 83.2% for patients and 92.2% for clinicians. Two patients (of 117) had Rh-negative blood type in the EHR. The vast majority of participants found the EldonCard testing easy (94.4%) and felt comfortable doing the testing (93.7%). Participants with lower education levels felt less confident (p=0.003) and less comfortable with testing (p=0.038); however, their ability to interpret results was similar to others (p=0.051).
CONCLUSIONS: Patient-performed Rh typing via the EldonCard is an effective and acceptable option for patients, and could be used as a primary screening test for Rh status.

OBJECTIVE: To determine the relationship between spiritual care and patient advocacy across three generations of nurses working in intensive care units.
METHODS: Cross-sectional survey.
METHODS: Data collection took place from July to August 2022 with 120 nurses in Turkey. Data collection tools included the Spiritual Caregiving Competency Scale, the Spirituality and Spiritual Care Assessment Scale, and the Patient Advocacy Scale for Nurses. Data on nurses\' demographics were evaluated using descriptive statistical methods (number, percentage, mean, standard deviation). Independent sample t-test, one-way ANOVA, Pearson correlation, and linear multiple regression analysis were used to evaluate the relationships between variables, with results reported as 95% confidence intervals (CI).
RESULTS: More than half of the nurses were from Generation Y (39.2 %) and Generation Z (42.5 %). Generation Z\'s mean patient advocacy score (156.96 ± 23.16) was statistically significantly higher than Generation X\'s (139.32 ± 34.26). We determined that the spiritual competence scale communication sub-dimension score of Generation Y nurses working between 1-10 years was higher than that of Generation Z nurses. Additionally, as the patient advocacy scores of all generations increased, so did spiritual competence scores.
CONCLUSIONS: The study found differences in patient advocacy and spiritual care competencies between generations. Thus, we recommend organizing courses, seminars, and in-service training on patient advocacy and spiritual care for intensive care nurses.
CONCLUSIONS: This study estimates nurses\' spiritual care competencies and patient advocacy levels from different generations and sheds light on the literature to eliminate differences in care between generations in nursing practices that evolve and change over time. It is recommended that courses, seminars, in-service training, spiritual activities, and interactive meetings be organized to encourage the participation of intensive care nurses to minimize the differences in spiritual care and patient advocacy among all generations of intensive care nurses.

Medical assistance in dying (MAiD) was legalised federally in Canada after the Supreme Court decision in Carter v Canada (Attorney General) [2015] 1 SCR 331. The federal legislative framework for MAiD was established via Bill C-14 in 2016. Caregivers and patients were central to Carter and subsequent litigation and advocacy, which resulted in amendments to the law via Bill C-7 in 2021. Research has primarily focused on the impacts of regulation on caregivers and patients. This qualitative study investigates how caregivers and patients influence law reform and the operation of MAiD practice in Canada (ie, behave as \'regulatory actors\'), using Black\'s definition of regulation. We found that caregivers and patients performed sustained, focused, and intentional actions that influenced law reform and the operation of MAiD in practice. Caregivers and patients are not passive objects of Canadian MAiD regulation, and their role in influencing regulation (eg, law reform and MAiD practice) should be supported where this is desired by the person. However, recognising the burdens of engaging in regulatory action to address barriers to accessing MAiD or to quality care, and MAiD system gaps, other regulatory actors (eg, governments) should minimise this burden, particularly where a person engages in regulatory action reluctantly.

BACKGROUND: The VACCELERATE Pan-European Scientific network aims to strengthen the foundation of vaccine trial research across Europe by following the principles of equity, inclusion, and diversity. The VACCELERATE Volunteer Registry network provides access to vaccine trial sites across the European region and supports a sustainable volunteer platform for identifying potential participants for forthcoming vaccine clinical research.
OBJECTIVE: The aim of this study was to approach members of patient advocacy groups (PAGs) across Europe to assess their willingness to register for the VACCELERATE Volunteer Registry and their perspectives related to participating in vaccine trials.
METHODS: In an effort to understand how to increase recruitment for the VACCELERATE Volunteer Registry, a standardized survey was developed in English and translated into 8 different languages (Dutch, English, French, German, Greek, Italian, Spanish, and Swedish) by the respective National Coordinator team. The online, anonymous survey was circulated, from March 2022 to May 2022, to PAGs across 10 European countries (Belgium, Cyprus, Denmark, France, Germany, Greece, Ireland, Italy, Spain, and Sweden) to share with their members. The questionnaire constituted of multiple choice and open-ended questions evaluating information regarding participants\' perceptions on participating in vaccine trials and their willingness to become involved in the VACCELERATE Volunteer Registry.
RESULTS: In total, 520 responses were collected and analyzed. The PAG members reported that the principal criteria influencing their decision to participate in clinical trials overall are (1) the risks involved, (2) the benefits that will be gained from their potential participation, and (3) the quality and quantity of information provided regarding the trial. The survey revealed that, out of the 520 respondents, 133 individuals across all age groups were \"positive\" toward registering in the VACCELERATE Volunteer Registry, with an additional 47 individuals reporting being \"very positive.\" Respondents from Northern European countries were 1.725 (95% CI 1.206-2.468) times more likely to be willing to participate in the VACCELERATE Volunteer Registry than respondents from Southern European countries.
CONCLUSIONS: Factors discouraging participants from joining vaccine trial registries or clinical trials primarily include concerns of the safety of novel vaccines and a lack of trust in those involved in vaccine development. These outcomes aid in identifying issues and setbacks in present registries, providing the VACCELERATE network with feedback on how to potentially increase participation and enrollment in trials across Europe. Development of European health communication strategies among diverse public communities, especially via PAGs, is the key for increasing patients\' willingness to participate in clinical studies.

Canadian patients and families affected by rare genetic lysosomal storage diseases (LSDs) suffer from numerous challenges related to disease management, including issues navigating healthcare and social support services, access to orphan drugs, and intensive treatment regimens. These challenges significantly impact people\'s quality of life, yet they remain obscure and have not been the subject of comprehensive analysis. Thus, we conducted qualitative interviews with Canadian patients and caregivers living with LSDs to advance current understanding of their experiences with rare-disease (RD) management and health systems navigation to support patient-focused RD policies and programs and improve the health outcomes of the 2.8 million Canadians affected by RDs. This study employed a qualitative descriptive research design with inductive thematic analysis. The study data were collected using semi-structured interviews. Thirty Canadian participants were interviewed in person or remotely via video chat to allow for an interactive discussion and the acquisition of rich data related to the insights and perceptions of people with LSDs. Between April and November 2019, 30 participants (16 patients and 14 caregivers) with experiences with nine types of LSDs and living in seven Canadian provinces were interviewed. Five themes were identified using comprehensive thematic analysis. These themes were the complexity of the diagnosis process; navigation of healthcare systems; psychological, social, and financial implications of LSDs; access to social support services; and access to orphan drugs. Our findings reveal that patients\' access to appropriate healthcare and social services is subject to significant delays and lacks care coordination. The process of accessing orphan drugs in Canada is extremely complex and convoluted. The study results also illuminate experiences of RD stigma when navigating healthcare and social support systems. Our study offers new insights into the complex nature and extensive needs of Canadians with LSDs that are currently unmet. The management of these complex diseases requires holistic patient care and support beyond having access to orphan drugs. Our findings highlight the importance of bridging existing gaps between health and social care for RD patients. Policymakers should utilize these results when developing the forthcoming national RD strategy.

Top-down and externally imposed quality requirements can lead to improvement but do not seem as sustainable as intended. There is a need for a quality model that intrinsically motivates healthcare professionals to contribute to quality and safe care in hospitals. This study shows how a quality model that matches the identity and the quality vision of the organization was developed. A multimethod design with three phases was used in the development of the model at a large teaching hospital in Belgium. In the first phase, 14 focus groups and 19 interviews with staff members were conducted to obtain an overview of the quality and safety challenges, complemented by a plenary discussion with the members of the patient advisory council. In the second phase, the challenges that had been captured were further assessed using a hospital-wide survey for all hospital staff. Finally, a newly established quality review board (with internal and external stakeholders) critically evaluated the input of Phases 1 and 2 and defined the basic quality standards to be implemented in the hospital. A first evaluation 2 years after the implementation was conducted based on (i) patients\' perceptions of quality of care and patient safety by publicly available indicators collected in 2016, 2019, and 2022 and (ii) staff experiences and perceptions regarding the acceptability of the new model gathered through (grouped) interviews and an open questionnaire. The quality model consists of eight broad themes, including norms for the hospital staff (n = 27), sustained with quality systems (n = 8), and organizational support (n = 6), with aid from adequate management and leadership (n = 6). The themes were converted into 46 standards. These should be supported within a safe, efficient, and caring work environment. The new model was launched in the hospital in June 2021. The evaluation shows a significant difference in quality and safety on different dimensions as perceived by hospitalized patients. The perceived added value of the participatory model is a better fit with the needs of employees and the fact that the model can be adjusted to the specific context of the different hospital departments. The lack of hard indicators is seen as a challenge in monitoring quality and safety. The participation of various stakeholders inside and outside the organization in defining the quality challenges resulted in the creation of a participatory quality model for the hospital, which leads towards a better-supported quality policy in the hospital.

There is currently limited research related to mental health supports for individuals who use AAC, particularly about the actual lived experiences of AAC users who receive mental health services. There may be alterations to mental health services for individuals who use AAC. The aim of this study was to gain the perspectives of AAC users on accessing and receiving mental health services. Three participants who used AAC and received mental health services shared their experiences related to receiving mental health services. Data were analyzed using an inductive approach in which themes were based on participants\' experiences. Five major themes were generated: (a) Time, (b) Communication Partner Skills, (c) Advocacy, (d) Means of Expression, and (e) Diagnosis. Participants described factors that positively or negatively impacted their experiences. Participant experiences were examined in light of Bronfenbrenner\'s Ecological Systems model. The findings of this study provide insights into the perspectives of individuals who use AAC in accessing mental health services, uncovering various barriers and facilitators within the patient-psychotherapist microsystem. Factors such as time constraints, communication partner skills, advocacy, means of expression, and diagnosis-related challenges significantly influenced the quality of interaction between patients using AAC and their mental health provider. The study also reveals the broader impacts of AAC on interactions within the meso-, exo-, and macro-systems, suggesting the need for improved involvement of speech-language pathologists and policy changes to support effective communication and accessibility for individuals using AAC in mental health settings. Ultimately, future research should involve participants of varying ages, diagnoses, and backgrounds and should include a variety of stakeholders.

A 28-day Prostate Cancer-Patient Empowerment Program (PC-PEP) developed through patient engagement was successful at promoting mental and physical health. Thirty prostate cancer patients from Halifax, Canada participated in the 28-day PC-PEP intervention in early 2019. PC-PEP encompassed daily patient education and empowerment videos, prescribed physical activities (including pelvic floor exercises), a mostly plant-based diet, stress reduction techniques, intimacy education, social connection, and support. Quantitative exit surveys and semi-structured interviews (conducted in focus groups of ten) were used to assess perceived factors that facilitated or impeded adherence to the program. The program received high praise from the patients and was deemed extremely useful by the participating men, who rated it 9 out of 10. Patients expressed that the multifaceted, online, home-based nature of the program helped them adhere to it better than they would have had to a single or less comprehensive intervention. Feedback from the participants indicated that the program, when viewed as a whole, was perceived as greater than the sum of its individual parts. Furthermore, the program addressed various issues, including emotional vulnerability and distress, physical fitness, urinary incontinence, challenges in expressing emotions, perceived lack of control over healthcare decisions, emotional fragility, and hesitancy to discuss prostate cancer-related matters in social settings. Patients highly (9.6/10) endorsed integrating the program into the standard care regimen from the very beginning of diagnosis. However, challenges such as work commitments were noted. Patients\' high endorsement of PC-PEP suggests that its implementation into the standard of care from day one of diagnosis may be warranted.

UNASSIGNED: To sustainably address challenges in implementing precision medicine (PM), coordinated efforts of different stakeholders are required. Understanding their expectations represents a first key step toward aligning on future actions and strategies. Here, we aimed to explore the expectations of different stakeholders from themselves and each other regarding PM.
UNASSIGNED: This collaborative qualitative study was initiated by the global multistakeholder consortium From Testing to Targeted Treatments (FT3). Structured interviews were conducted with participants from five stakeholder groups: patients/patient advocates, healthcare providers (HCPs), researchers, policymakers/regulators/payers and industry representatives. A broad reach across geography, roles, experiences, and disease areas was sought. Results were analyzed by grounded theory methodology.
UNASSIGNED: All stakeholders stated that optimal implementation of PM can only be achieved through collaboration; industry representatives were the biggest promoters of collaboration. Stakeholders agreed that PM should be implemented focusing on the patient\'s best interest; HCPs were seen as important gatekeepers for PM by interacting directly with patients, and policymakers/payers were perceived as the most important drivers of access to PM. Areas of misalignment included the role of industry in clinical trial design and in access to PM (perceived as important by patients, HCPs and policymakers but not by industry representatives), and the stakeholders responsible for elaborating guidelines on PM use (patients indicated policymakers, while researchers indicated themselves). Priorities for optimal PM implementation and suggested actions included the need for enhancing high-level policy focus, improving genomic literacy, optimizing the health technology assessment for PM, advocating for equitable access, promoting collaboration between industry and other stakeholder groups and development of reliable research standards.
UNASSIGNED: Stakeholder expectations revealed in this study suggested that no stakeholder group can drive change on its own; a global, multistakeholder collaborative approach that brings together current programs and best practices to support universal access to PM is needed.