Implementing Patient-Centered Outcomes Research Institute Stakeholder Engagement Principles in Models of Palliative Care Delivery and Advance Care Planning Research.

BACKGROUND: Given the many challenges of conducting research that addresses the palliative and end-of-life care needs of patients with serious illnesses, stakeholder engagement starting from the moment of study conceptualization and design is critical to ensure successful participant recruitment, data collection, intervention delivery, data analysis, and dissemination. METHODS: Guided by a conceptual model published by the Patient-Centered Outcomes Research Institute (PCORI) entitled, "Measuring What Matters for Advancing the Science and Practice of Engagement"14 and with the support of a PCORI Engagement Officer, representatives from 9 PCORI-funded study teams formed a working group to survey team members and review, outline, and describe key lessons learned and best practices for promoting stakeholder engagement in palliative care research. RESULTS: Almost all study teams engaged with patients/caregivers, clinicians, researchers, and health care system experts as stakeholder partners. About half the teams also included payers and training institutions as part of their stakeholder advisors as well as a range of content experts. Study teams relied on a variety of support structures and resources, and they employed 10 distinct methods for maintaining engagement. All engagement methods were generally considered to be effective by teams who used the method, though there was some variability in team-rated engagement quality of each method. Nine barriers to stakeholder engagement were identified across the 9 studies as well as 9 strategies (or facilitators) to overcome these barriers. We share examples of how stakeholder engagement impacted studies in all phases, including the preparatory phase, study initiation phase, execution phase, and data analysis/dissemination phase. CONCLUSIONS: Teams utilized a variety of resources and support structures as well as capitalized on multiple engagement methods for fostering stakeholder engagement, resulting in a high level of collaboration and integration.

What are the functional outcomes and service experiences of patients with head and neck cancer treated during the COVID-19 pandemic?

INTRODUCTION: Head and neck cancer (HNC) care was significantly impacted by the COVID-19 pandemic. The current study aimed to explore the functional outcomes and service experiences of patients with HNC treated during and prior the COVID-19 pandemic. METHODS: Mixed methods were used to (1) retrospectively compare HNC patients' functional outcomes and allied health service usage across two time-controlled cohorts and (2) understand the experiences of HNC care using validated surveys and qualitative interviews. RESULTS: Retrospective data was extracted for 78 participants (pre-COVID-19, n = 43; during-COVID-19, n = 35), with n = 28 and n = 18 completing surveys and an interview, respectively. Significant differences were found in service modality between groups with significantly more phone and telehealth services provided during COVID-19. Service usage and functional outcomes were not significantly different between groups. During-COVID-19 participants reported being significantly less informed about their care and care was significantly less appropriate and acceptable. Thematic analysis of interviews revealed six broad themes related to communication, person-centred care, treatment logistics, care availability, safety of care, and impacts on experiences. CONCLUSIONS: This study revealed that whilst HNC care rapidly changed at the onset of COVID-19, patient access to treatment and functional outcomes did not differ significantly. Rather, factors related to the patient experience of care were discussed. Healthcare professionals working in HNC have further evidence supporting building relationships based on transparent communication and partnering with patients to overcome rapid clinical changes, as experienced during COVID-19.

Person-centred integrated care for people living with Parkinson's, Huntington's and Multiple Sclerosis: A systematic review.

INTRODUCTION: People living with long-term neurological conditions (LTNCs) have complex needs that demand intensive care coordination between sectors. This review aimed to establish if integrated care improves outcomes for people, and what characterises successful interventions. METHODS: A systematic review of the literature was undertaken evaluating multisectoral integrated care interventions in people living with Parkinson's disease (PD), Multiple Sclerosis (MS) and Huntington's disease (HD). Strength of evidence was rated for the different outcomes. RESULTS: A total of 15 articles were included, reporting on 2095 patients and caregivers, finding that integrated care can improve people's access to resources and reduce patients' depression. UK studies indicated improvements in patients' quality of life, although the international literature was inconclusive. Few programmes considered caregivers' outcomes, reporting no difference or even worsening in depression, burden and quality of life. Overall, the evidence showed a mismatch between people's needs and outcomes measured, with significant outcomes (e.g., self-management, continuity of care, care experience) lacking. Successful programmes were characterised by expert knowledge, multisectoral care coordination, care continuity and a person-centred approach. CONCLUSIONS: The impact of integrated care programmes on people living with LTNCs is limited and inconclusive. For a more person-centred approach, future studies need to assess integrated care from a service-user perspective. PATIENT AND PUBLIC CONTRIBUTION: Thirty people living with LTNCs were involved in this review, through defining research questions, validating the importance of the project, and increasing the researchers' understanding on what matters to service users. A patient and public involvement subgroup of representatives with lived experience on PD, MS and HD identified the need for more person-centred integrated care, with specific concerns over care fragmentation, care duplication and care continuity. This was key to data analysis and formulating the characteristics of successful and unsuccessful integrated care programmes from the perspective of service users. The discrepancy between service users' needs and the outcomes assessed in the literature point to user-driven research as the solution to address what matters to patients and caregivers.

Person-centered care for common mental disorders in Ontario's primary care patient-centered medical homes: a qualitative study of provider perspectives.

BACKGROUND: For more than a decade, the Patient-Centered Medical Home model has been a guiding vision for the modernization of primary care systems. In Canada, Ontario's Family Health Teams (FHTs) were designed in the mid-2000s with the medical home model in mind. These primary care clinics aim to provide accessible, comprehensive, and person-centered primary care services to communities across Ontario. Their services typically include mental health care for people experiencing common mental disorders, such as depression and anxiety disorders. It remains unclear, however, whether the mental health care delivered within FHTs is consistent with person-centered care approaches. In the current study, we aimed to explore the perspectives of FHT providers on the care delivered to people with common mental disorders to determine whether, and to what extent, they believed this care was person-centered. METHODS: We conducted a qualitative grounded theory study involving interviews with 65 health professionals and administrators from 18 FHTs across Ontario. Transcripts were coded using a three-step process of initial, focused, and axial coding that mixed inductive and deductive approaches informed by sensitizing concepts on person-centeredness. RESULTS: Practices and challenges associated with the delivery of mental health care in a person-centered way were captured by several themes regrouped into five domains: (1) patient as unique person, (2) patient-provider relationship, (3) sharing power and responsibility, (4) connecting to family and community, and (5) creating person-centered care environments. FHT providers perceived that they delivered person-centered care by delivering mental health care that was responsive, flexible, and consistent with biopsychosocial approaches. They emphasized the importance of creating long-lasting relationships with patients grounded in empathy and trust. Their challenges included being able to ensure continuity of care, adequately prioritizing patients' mental health issues, and meaningfully engaging patients and families as partners in care. CONCLUSIONS: Our findings suggest that FHT providers have adopted a range of person-centered practices for people with common mental disorders. However, greater attention to practices such as shared decision making, supporting self-management, and involving families in care would strengthen person-centeredness and bring teams closer to the Patient-Centered Medical Home vision.

Inclusive organisational user involvement can reduce disparities in health and social care.

Person-centered care and user involvement have gained focus in the public welfare agenda, as well as in the health sector. However, it has become clear that there is a bias in favor of resourceful citizens in the organisational user involvement. This bias can enhance disparities in health and social care. In this review, reasons that may underlie the bias in organisational user involvement are elucidated, and examples of ways to create more inclusive user involvement are given.

Person-Centered, Goal-Oriented Care Helped My Patients Improve Their Quality of Life.

When the goal is to help patients improve their quality of life, it makes sense to focus directly on the activities and relationships that are most important to each patient. This can be accomplished most effectively by following a three-step process that includes 1) connecting with the patient around what matters to them, 2) co-creating a goal-oriented plan, and 3) collaborating with patient, family, team members, and consultants to increase the probability of success. Once this approach has been mastered and the necessary systems, processes, and relationships are in place, this should not take more time than a problem-oriented approach, and it will almost certainly be more satisfying for both physician and patient. The impact on population-based quality metrics is uncertain. Though fewer patients may choose to follow standard recommendations, those who do may be more likely to adhere to them.

A traffic light approach for treatment and supportive care stratification in lung cancer.

PURPOSE OF REVIEW: Comprehensive supportive care interventions for patients with lung cancer are being investigated in a range of ways, including: early palliative care, prehabilitation and rehabilitation. We review recent literature on supportive care and propose a traffic light system to individualise comprehensive supportive care. Green for those very likely to receive anti-cancer treatment, red for those very unlikely to receive anti-cancer treatment and orange where the chance of accessing treatment is uncertain. Comprehensive supportive care can be individualised based on the group a particular patient is in. RECENT FINDINGS: Lung cancer outcomes are improving with the availability of increasingly efficacious treatments; however, treatment rates for advanced disease remain low. In this review, we discuss how person-centred outcomes could be improved, how outcomes can be prognosticated and how the 'host' can be staged as well as the cancer. Recent data suggests that early comprehensive supportive care improves quality of life, reduces time spent in hospital and may affect survival. SUMMARY: Comprehensive supportive care is likely to improve quality of life in patients with advanced lung cancer. Further work is needed to see if it can improve treatment rates and survival.

Establishing consensus on patient- and family-centered care in adult intensive care units: A Delphi survey.

PURPOSE: To establish consensus between intensive care unit (ICU) experts on concrete patient- and family-centered care statements for adult patients and relatives in the ICU. MATERIALS AND METHODS: We did a three-round Delphi survey with a panel of ICU health care professionals from 23 ICUs in Denmark. In round 1, participants answered 20 open-ended questions, based on existing evidence. Analysis of their responses generated close-ended statements, which participants primary rated on a five-point-Likert-scale, from very important to not important at all. In rounds 2 and 3., consensus was predefined as ≥75% of participants rating a statement important. RESULTS: Sixty-nine participated: 38 nurses, 24 physicians, and four occupational and physiotherapists. In total 96%, 90% and 72% answered the first, second, and third rounds, respectively. In round 1, participants answers resulted in >3000 statements that were analyzed into 82 condensed statements. After participants rated the statements in round 2 and 3, 47 statements reached consensus as important. CONCLUSIONS: The 47 statements rated to be important included interdisciplinary approaches to systematic information sharing and consultations with patients and family-members, with the aim being to accommodate patients and family-members´ individual needs throughout the ICU stay.

Family-centered care for child cancer treatment in Ethiopia-A qualitative descriptive study.

BACKGROUND: Families are the primary source of support and strength in the care process of children with cancer. Family-centered care (FCC) is a healthcare delivery approach that considers parents as both partners and care recipients, characterized by providing care based on dignity and respect, information sharing, participation, and collaboration or partnership. AIM: This study aimed to describe the delivery of care based on the family-centered care approach at the Tikur Anbessa Specialized Hospital pediatric cancer unit. METHOD: An exploratory, descriptive qualitative study was conducted from March 2023 to August 2023. Eighteen participants (thirteen parents and five health care providers) were interviewed using a semi-structured interview guide. All interviews were audio-recorded, transcribed verbatim, and translated into English. The translated transcripts were used for inductive, data-driven thematic analysis. ATLAS.ti 9 software was used to assist the analysis process. RESULT: Two themes have emerged during the analysis. These are (1) Information sharing, and (2) Enabling and partnership. Under the information sharing theme, we described parents' understanding of child cancer, parents' information-related expectations, the process of obtaining information, adequacy of information received, and factors inhibiting information sharing. Under the enabling and partnership theme, we presented family participation in childcare, discussion among parents, parents' communication with healthcare providers and psychosocial support. CONCLUSION: Suboptimal implementation of family-centered care practice was identified at the pediatric oncology unit. PRACTICE IMPLICATIONS: The findings from this study indicate the need to strengthen the provision of child cancer-related information, improve communication, and strengthen family participation in childcare.

The effect of teamwork, communication skills, and structural empowerment on the provision of patient-centered care among nurses in Eswatini: A cross-sectional study.

AIMS: To identify the influence of teamwork, communication skills, and structural empowerment on providing patient-centered care among nurses in Eswatini. DESIGN: A quantitative, cross-sectional survey was used. METHODS: This survey conducted in Eswatini selected registered nurses working as full-time nurses with more than 3 months of working experience using convenience sampling. Different measures were adopted and used to collect data among 130 eligible nurses from February to March 2022. Data were analyzed using Statistical Program for Social Sciences version 26.0. RESULTS: A total of 123 nurses responded in the study and the mean age was 31.05 years with a standard deviation of 5.49. The overall response rate was 94.6% in this study. Hierarchical multiple regression analysis revealed that teamwork (ß = 0.236, p < 0.05) and communication skills (ß = 0.328, p < 0.05) were significant predictors of the provision of patient-centered care among nurses. CONCLUSION: Team-building exercises and management interventions to empower nurses should be established to improve the provision of patient-centered care among nurses. Nurses should be empowered to provide patient-centered care in health facilities by encouraging them to provide their input in management procedures and planning programs. IMPACT: Clinical practice requires nurses to use effective communication skills and work as a team. Nursing care established on teamwork, respect, empathy, and communication skills allows patients to express their concerns and views in health facilities as they feel involved in care. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution in this paper. This study only involved registered nurses as health professionals.

Integrating the Principles of Academic Freedom and Patient-Centered Care to Promote Tolerant Listening Skills in Health Care Providers.

ABSTRACT: Collaboration is a vital skill that needs to be developed in health professions students. Developing tolerance for differing viewpoints and valuing an understanding of others' lived experiences are instrumental skills in learning to provide patient-centered care. Fostering the expression of diverse viewpoints and working through uncomfortable and distressful situations are a part of the experience in acquiring these skills. It is the educator's duty to facilitate these encounters in a way that upholds the tenants of academic freedom and civility to create optimal educational outcomes. Doing so creates opportunities for transformative learning and the facilitation of higher cognitive development when compared with the avoidance of exposing students to divergent viewpoints. It is through freedom of discussion that one must teach students that ultimately the pursuit of truth, even when it may be unwelcome, disagreeable, or deeply offensive, greatly outweighs the discomfort the process of discovering it may bring.

Revolutionizing urogynecology: Machine learning application with patient-centric technology: Promise, challenges, and future directions.

In an epoch where digital innovation is redefining the medical landscape, electronic health records (EHRs) stand out as a pivotal transformative force. Urogynecology, a discipline anchored in intricate patient histories and meticulous follow-ups, is on the brink of profound transformation due to these digital strides. While EHRs have unified patient data, challenges related to data privacy, interoperability, and access persist. In response, we present Pelvic Health Place (PHPlace) - a multilingual, patient-centric application. Purposefully designed to bolster patient engagement, PHPlace provides clinicians with essential pre-consultation insights, streamlines the consent process, vividly delineates surgical pathways, and assures comprehensive long-term monitoring. This platform also establishes a foundation for global data amalgamation, promising to invigorate research and potentially harness artificial intelligence (AI) capabilities. With AI integration, we anticipate a more tailored treatment approach and enriched patient education, signaling a pivotal shift in urogynecology and emphasizing the imperative for ongoing academic inquiry.

AI-Powered Patient-Centered Care: A Call to Action for Innovation.

SUMMARY: The influential report Crossing the Quality Chasm: A New Health System for the 21st Century established six core objectives to enhance healthcare quality. It highlighted the necessity for healthcare to encompass safety, effectiveness, a patient-centered approach, timeliness, efficiency, and equity. This essay focuses on one of these six core objectives: a patient-centered approach. Healthcare leaders actively seek solutions to improve and ensure the delivery of high-quality care. The imperative to provide quality healthcare underscores the need for artificial intelligence (AI) to become an essential component in a patient-centered approach rather than merely an optional advantage. Despite the expansion of AI, there is a lack of understanding of how AI can improve patient-centered care. This essay examines the fundamental aspects of patient-centered care, as outlined by the Picker Institute, while also exploring the prospective role of AI in advancing the core principles of patient-centered care and proposing frameworks for applying AI in healthcare.

Promoting Equitable Access to Language Services in Oral Health: A Report from the Field.

Providing equitable, patient-centered oral health care requires the dental community to address the cultural and linguistic needs and preferences of patients and their communities. This report describes our three-part demonstration project, providing an innovative framework and interprofessional approach to enhance language access in oral health care.

The implementation and impacts of the Comprehensive Care Standard in Australian acute care hospitals: a survey study.

BACKGROUND: Comprehensive care (CC) is becoming a widely acknowledged standard for modern healthcare as it has the potential to improve health service delivery impacting both patient-centred care and clinical outcomes. In 2019, the Australian Commission on Safety and Quality in Health Care mandated the implementation of the Comprehensive Care Standard (CCS). However, little is known about the implementation and impacts of the CCS in acute care hospitals. Our study aimed to explore care professionals' self-reported knowledge, experiences, and perceptions about the implementation and impacts of the CCS in Australian acute care hospitals. METHODS: An online survey using a cross-sectional design that included Australian doctors, nurses, and allied health professionals in acute care hospitals was distributed through our research team and organisation, healthcare organisations, and clinical networks using various methods, including websites, newsletters, emails, and social media platforms. The survey items covered self-reported knowledge of the CCS and confidence in performing CC, experiences in consumer involvement and CC plans, and perceptions of organisational support and impacts of CCS on patient care and health outcomes. Quantitative data were analysed using Rstudio, and qualitative data were analysed thematically using Nvivo. RESULTS: 864 responses were received and 649 were deemed valid responses. On average, care professionals self-reported a moderate level of knowledge of the CCS (median = 3/5) and a high level of confidence in performing CC (median = 4/5), but they self-reported receiving only a moderate level of organisational support (median = 3/5). Only 4% (n = 17) of respondents believed that all patients in their unit had CCS-compliant care plans, which was attributed to lack of knowledge, motivation, teamwork, and resources, documentation issues, system and process limitations, and environment-specific challenges. Most participants believed the CCS introduction improved many aspects of patient care and health outcomes, but also raised healthcare costs. CONCLUSION: Care professionals are confident in performing CC but need more organisational support. Further education and training, resources, multidisciplinary collaboration, and systems and processes that support CC are needed to improve the implementation of the CCS. Perceived increased costs may hinder the sustainability of the CCS. Future research is needed to examine the cost-effectiveness of the implementation of the CCS.

Shifting paradigms: A collective and structural strategy for addressing healthcare inequity.

Healthcare inequity is a persistent systemic problem, yet many solutions have historically focused on "debiasing" individuals. Individualistic strategies fit within a competency-based medical education and assessment paradigm, whereby professional values of social accountability, patient safety, and healthcare equity are linked to an individual clinician's competence. Unfortunately, efforts to realise the conceptual linkages between medical education curricula and goals to improve healthcare equity fail to address the institutional values, policies, and practices that enable structural racism. In this article, we explore alternative approaches that target collective and structural causes of health inequity. We first describe the structural basis of healthcare inequity by identifying the ways in which institutional culture, power and privilege erode patient-centred care and contribute to epistemic injustice. We then outline some reasons that stereotypes, which are a culturally supported foundation for discrimination, bias and racism in healthcare, cannot be modified effectively through individualistic strategies or education curricula. Finally, we propose a model that centres shared values for leadership by individuals and institutions with consistency in goal setting, knowledge translation, and talent development. Figure 1 summarises the key recommendations. We have provided cases to supplement this work and facilitate discussion about the model's application to practice.

Benchmarking Sweden's Digitalization Transformation Strategy-Is It a Good Fit for the UAE?

Background: The ongoing revolution in health care, driven by wearable technology, virtual reality, and the Internet of Things, is reshaping both health care operations and our daily lives. This digital transformation ensures broader access to health care options, fosters patient-centered care and affects both health care institutions and individuals. In Sweden, health care is undergoing a digital shift, with initiatives like personal health management, remote monitoring, and virtual care enhancing patient involvement. This article reviews Sweden's health care digital transformation and compares it with the United Arab Emirates (UAE's) initiatives to assess viability. Methods: Using systematic literature review methods, databases from 2011 to 2023 were searched, supplemented by reference lists. Results: Database searches identified 761 records. A total of 480 articles were screened on basis of title and abstract, yielding 184 that were assessed for eligibility, leading to 40 academic studies to be included and 12 grey literature. Conclusions: The findings highlight Sweden's success in empowering patients through enhanced connectivity with clinical teams, knowledge sharing, and care management. However, due to contextual differences, the UAE should not blindly replicate Sweden's strategy. In conclusion, Sweden's efforts have positively engaged patients in health care, but challenges such as emerging technologies, demographic shifts, and budget constraints persist. Proactive planning and adaptation are crucial, with lessons applicable to the UAE market. Establishing a clear regulatory framework for digital care is imperative for future resilience.