Six ways to get a grip on patient and family centered care during the undergraduate medical years.

Patient and family-centered care and patient engagement practices have strong evidence-based links with quality and safety for both patients and health care providers. Expectations for patient and family-centered care have advanced beyond hearing the patient perspective and taking patient wishes into account. A participatory approach including patients as partners in their care journey is expected, but attitudes toward patient and family-centered care remain barriers in practice. As health service organizations shift from a system-centered approach to a patient and family-centered care delivery model, black ice occurs. In this Black Ice article, we present some practical tips for medical educators to improve opportunities for medical students to develop knowledge, attitudes, and skills that support patient and family-centered care.

Le lien entre les soins axés sur le patient et la famille et l'engagement des patients d'un côté et la qualité et la sécurité des soins, tant pour les patients que pour les prestataires de services, de l'autre, a été solidement démontré. Les attentes en matière de soins axés sur le patient et la famille ont évolué et elles ne se limitent plus à recueillir le point de vue du patient et à prendre en considération ses souhaits. On préconise désormais une approche participative faisant intervenir les patients en tant que partenaires dans leur cheminement clinique. Toutefois, certaines attitudes à l'égard des soins axés sur le patient et la famille freinent la mise en pratique d'une telle démarche. Dans les organismes de services de santé, le passage d'une approche centrée sur le système à un modèle de prestation de soins axé sur le patient et la famille constitue un terrain glissant. Nous proposons ici quelques stratégies pratiques pour aider les enseignants en médecine à faciliter l'acquisition par les étudiants des connaissances, des attitudes et des habiletés qui favorisent les soins centrés sur le patient et la famille.

Bridge-to-Home: A Case Study of the Mutually Reinforcing Benefits of Patient Engagement-Focused Quality Improvement Initiatives for Transitions out of Hospital.

The Bridge-to-Home program was launched as a 16-month collaborative from 2018 to 2020 to improve care transitions out of hospital using a patient engagement-focused quality improvement (QI) initiative. Teams that participated in the collaborative were able to implement elements of the patient-oriented care transitions bundle, improve experience of care transitions and increase capacity for patient engagement for both patient partners and providers. In this article, we highlight three case studies of teams in different types of organizations with different levels of patient engagement maturation. Key enablers and barriers are identified with a specific lens on engagement efforts to co-produce changes in the processes and experience of care. These cases illustrate that providing support for patient engagement when leading a QI initiative is mutually reinforcing, where patient engagement and QI support and strengthen each other, resulting in increased success of the quality initiative and increased capacity for patient engagement.

Commentary: Engagement for Research and Quality Improvement - More Than Just Words.

We reflect on the paper from Hahn-Goldberg et al. (2024) who shared key learnings from a pan-Canadian quality improvement (QI) and patient engagement care transition initiative called Bridge-to-Home. In considering the approach and outcomes presented in their paper, we have generated reflections and practical suggestions on how to amplify engagement work even further: (1) patient engagement and QI are about relationships; (2) seamlessly implementing complex interventions across siloed organizations continues to be a challenge, which engagement alone cannot solve; (3) it is time for a paradigm shift; (4) QI is about human behaviour change and is inherently messy; and (5) embedding fulsome evaluation of engagement is essential.

My anesthesia Choice-HF: development and preliminary testing of a tool to facilitate conversations about anesthesia for hip fracture surgery.

BACKGROUND: Patients often desire involvement in anesthesia decisions, yet clinicians rarely explain anesthesia options or elicit preferences. We developed My Anesthesia Choice-Hip Fracture, a conversation aid about anesthesia options for hip fracture surgery and tested its preliminary efficacy and acceptability. METHODS: We developed a 1-page, tabular format, plain-language conversation aid with feedback from anesthesiologists, decision scientists, and community advisors. We conducted an online survey of English-speaking adults aged 50 and older. Participants imagined choosing between spinal and general anesthesia for hip fracture surgery. Before and after viewing the aid, participants answered a series of questions regarding key outcomes, including decisional conflict, knowledge about anesthesia options, and acceptability of the aid. RESULTS: Of 364/409 valid respondents, mean age was 64 (SD 8.9) and 59% were female. The proportion indicating decisional conflict decreased after reviewing the aid (63-34%, P < 0.001). Median knowledge scores increased from 50% correct to 67% correct (P < 0.001). 83% agreed that the aid would help them discuss options and preferences. 76.4% would approve of doctors using it. CONCLUSION: My Anesthesia Choice-Hip Fracture decreased decisional conflict and increased knowledge about anesthesia choices for hip fracture surgery. Respondents assessed it as acceptable for use in clinical settings. PRACTICE IMPLICATIONS: Use of clinical decision aids may increase shared decision-making; further testing is warranted.

A service-user digital intervention to collect real-time safety information on acute, adult mental health wards: the WardSonar mixed-methods study.

Background: Acute inpatient mental health services report high levels of safety incidents. The application of patient safety theory has been sparse, particularly concerning interventions that proactively seek patient perspectives. Objective(s): Develop and evaluate a theoretically based, digital monitoring tool to collect real-time information from patients on acute adult mental health wards about their perceptions of ward safety. Design: Theory-informed mixed-methods study. A prototype digital monitoring tool was developed from a co-design approach, implemented in hospital settings, and subjected to qualitative and quantitative evaluation. Setting and methods: Phase 1: scoping review of the literature on patient involvement in safety interventions in acute mental health care; evidence scan of digital technology in mental health contexts; qualitative interviews with mental health patients and staff about perspectives on ward safety. This, alongside stakeholder engagement with advisory groups, service users and health professionals, informed the development processes. Most data collection was virtual. Phase 1 resulted in the technical development of a theoretically based digital monitoring tool that collected patient feedback for proactive safety monitoring. Phase 2: implementation of the tool in six adult acute mental health wards across two UK NHS trusts; evaluation via focused ethnography and qualitative interviews. Statistical analysis of WardSonar data and routine ward data involving construction of an hour-by-hour data set per ward, permitting detailed analysis of the use of the WardSonar tool. Participants: A total of 8 patients and 13 mental health professionals participated in Phase 1 interviews; 33 staff and 34 patients participated in Phase 2 interviews. Interventions: Patients could use a web application (the WardSonar tool) to record real-time perceptions of ward safety. Staff could access aggregated, anonymous data to inform timely interventions. Results: Coronavirus disease 2019 restrictions greatly impacted the study. Stakeholder engagement permeated the project. Phase 1 delivered a theory-based, collaboratively designed digital tool for proactive patient safety monitoring. Phase 2 showed that the tool was user friendly and broadly acceptable to patients and staff. The aggregated safety data were infrequently used by staff. Feasibility depended on engaged staff and embedding use of the tool in ward routines. There is strong evidence that an incident leads to increased probability of further incidents within the next 4 hours. This puts a measure on the extent to which social/behavioural contagion persists. There is weak evidence to suggest that an incident leads to a greater use of the WardSonar tool in the following hour, but none to suggest that ward atmosphere predicts future incidents. Therefore, how often patients use the tool seems to send a stronger signal about potential incidents than patients' real-time reports about ward atmosphere. Limitations: Implementation was limited to two NHS trusts. Coronavirus disease 2019 impacted design processes including stakeholder engagement; implementation; and evaluation of the monitoring tool in routine clinical practice. Higher uptake could enhance validity of the results. Conclusions: WardSonar has the potential to provide a valuable route for patients to communicate safety concerns. The WardSonar monitoring tool has a strong patient perspective and uses proactive real-time safety monitoring rather than traditional retrospective data review. Future work: The WardSonar tool can be refined and tested further in a post Coronavirus disease 2019 context. Study registration: This study is registered as ISRCTN14470430. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR128070) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 14. See the NIHR Funding and Awards website for further award information.

Mental health wards can feel unsafe. We know that patients and staff have different ideas about what makes a hospital ward safe or unsafe. Patients are often the first to know when the atmosphere on a ward becomes tense but, often, no one asks them for input or feedback at the time. We worked with service users and staff to develop new technology to make it easy for patients to tell staff about changes in the ward atmosphere. We put everyone's ideas together and some technical developers then built a digital safety tool to use on a tablet computer. Patients put in anonymous information about the ward atmosphere and staff can read it straight away. We tested it on six adult acute mental health wards for 10 weeks. We asked patients and staff what they thought about the tool and we looked at how it was being used. Patients and staff liked the look of the tool on the tablet computer. Some staff said they did not need it because they could tell how patients were feeling, but patients told us that staff did not talk with them much and did not always know when patients were feeling tense. Coronavirus disease 2019 made life difficult on the wards. Most ward managers said the tool could be helpful, but they had not had time to get used to it on the wards. Occasionally, the tablet computers were out of action. Many staff tried hard to use the tool. Most patient information was gathered when it was calm, perhaps because staff were not too busy to help them. We found that this tool could help staff know about tensions on the ward, but they need to get used to it and bring it into ward routines.

Oncology patients' willingness to report their medication safety concerns from home: a qualitative study.

PURPOSE: Oncology patients often struggle to manage their medications and related adverse events during transitions of care. They are expected to take an active role in self-monitoring and timely reporting of their medication safety events or concerns to clinicians. The purpose of this study was to explore the factors influencing oncology patients' willingness to report adverse events or concerns related to their medication after their transitions back home. METHODS: A qualitative interview study was conducted with adult patients with breast, prostate, lung, or colorectal cancer who experienced care transitions within the previous year. A semi-structured interview guide was developed to understand patients' perceptions of reporting mediation-related safety events or concerns from home. All interviews were conducted via phone calls, recorded, and transcribed for thematic data analysis. RESULTS: A total of 41 individuals participated in the interviews. Three main themes and six subthemes emerged, including patients' perceived relationship with clinicians (the quality of communication and trust in clinicians), perceived severity of adverse medication events (perceived severe vs. non-severe events), and patient activation in self-management (self-efficacy in self-management and engagement in monitoring health outcomes). CONCLUSION: The patient-clinician relationship significantly affects patients' reporting behaviors, which can potentially interact with other factors, including the severity of adverse events. It is important to engage oncology patients in medication safety self-reporting from home by enhancing health communication, understanding patients' perceptions of severe events, and promoting patient activation. By addressing these efforts, healthcare providers should adopt a more patient-centered approach to enhance the overall quality and safety of oncological care.

[Initiation to patient partnership in mental health and psychiatry from initial training onwards]. / Initiation dès la formation initiale au partenariat patient en santé mentale et psychiatrie.

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.

A typology of evaluative health platforms: Commercial interests and their implications for patient voice.

Interactions in the healthcare system today involve an important new set of actors: evaluative health platforms (EHPs). These platforms are not neutral intermediaries, but active moderators of how patients express opinions, choose providers, and consume health-related information. This paper adds to our understanding of the varied and evolving commercial interests of EHPs and the implications these have for patient voice. We analyze 71 platforms in the USA, UK, and Germany and identify five ideal types: subscribers, analyzers, advertisers, regulators, and scammers. Each platform type enacts a unique competitive strategy through an evaluative infrastructure which constrains but also generates possibilities for patient voice. Based on our typology, we develop three contributions. First, we nuance universalizing claims about the consequences of platform capitalism by specifying the diverse strategies underpinning competition between EHPs in different countries, and showing how each strategy leads evaluative infrastructures to develop in ways that impact patient voice. Second, we show how patients can navigate the challenges of a complex EHP space by exercising their ability to choose between platforms. Finally, we outline the conditions platforms need to fulfil to become empowering. Overall, this study highlights the varied and complex relationship between platform business models and user voice, which exists not only in healthcare, but also in many other fields.

Digital health technologies in enhancing patient and caregiver engagement in heart failure management: Opportunities and challenges.

The management of heart failure has undergone significant evolution, advancing from the initial utilization of digitalis and diuretics to the contemporary practice of personalized medicine and sophisticated device therapy. Despite these advancements, the persistent challenge of high hospitalization and readmission rates underscores an urgent need for innovative solutions. This manuscript explores how the integration of digital health technologies into interventional cardiology marks a paradigm shift in the management of heart failure. These technologies are no longer mere adjuncts but have become foundational to a modern approach, providing tools for continuous monitoring, patient education, and improved outcomes post-intervention. Through an examination of current trends, this perspective article highlights the transformative impact of wearable technologies, telehealth platforms, and advanced analytical tools in reshaping patient engagement and enabling proactive care strategies. Case studies illustrate the practical advantages, including enhanced medication adherence, early detection of heart failure signs, and a reduction in healthcare facility burdens. Central to this new digital health landscape is the Information Technology Management (ITM) system, a framework poised to revolutionize patient and caregiver engagement and pave the way for the future of interventional cardiology. This manuscript delineates the ITM system's innovative architecture and its consequential role in refining current and prospective cardiological interventions.

Using brief reflections to capture and evaluate end-user engagement: a case example using the COMPASS study.

BACKGROUND: Use of participatory research methods is increasing in research trials. Once partnerships are established with end-users, there is less guidance about processes research teams can use to successfully incorporate end-user feedback. The current study describes the use of a brief reflections process to systematically examine and evaluate the impact of end-user feedback on study conduct. METHODS: The Comparative Effectiveness of Trauma-Focused and Non-Trauma- Focused Treatment Strategies for PTSD among those with Co-Occurring SUD (COMPASS) study was a randomized controlled trial to determine the effectiveness of trauma-focused psychotherapy versus non-trauma-focused psychotherapy for Veterans with co-occurring posttraumatic stress disorder and substance use disorder who were entering substance use treatment within the Department of Veterans Affairs. We developed and paired a process of "brief reflections" with our end-user engagement methods as part of a supplemental evaluation of the COMPASS study engagement plan. Brief reflections were 30-minute semi-structured discussions with the COMPASS Team following meetings with three study engagement panels about feedback received regarding study issues. To evaluate the impact of panel feedback, 16 reflections were audio-recorded, transcribed, rapidly analyzed, and integrated with other study data sources. RESULTS: Brief reflections revealed that the engagement panels made recommended changes in eight areas: enhancing recruitment; study assessment completion; creating uniformity across Study Coordinators; building Study Coordinator connection to Veteran participants; mismatch between study procedures and clinical practice; therapist skill with patients with active substance use; therapist burnout; and dissemination of study findings. Some recommendations positively impact study conduct while others had mixed impact. Reflections were iterative and led to emergent processes that included revisiting previously discussed topics, cross-pollination of ideas across panels, and sparking solutions amongst the Team when the panels did not make any recommendations or recommendations were not feasible. CONCLUSIONS: When paired with end-user engagement methods, brief reflections can facilitate systematic examination of end-user input, particularly when the engagement strategy is robust. Reflections offer a forum of accountability for researchers to give careful thought to end-user recommendations and make timely improvements to the study conduct. Reflections can also facilitate evaluation of these recommendations and reveal end-user-driven strategies that can effectively improve study conduct. TRIAL REGISTRATION: ClinicalTrials.gov (NCT04581434) on October 9, 2020; https://clinicaltrials.gov/ct2/show/study/NCT04581434?term=NCT04581434&draw=2&rank=1 .

Interactive digital tools to support empowerment of people with cancer: a systematic literature review.

PURPOSE: To identify and synthesise interactive digital tools used to support the empowerment of people with cancer and the outcomes of these tools. METHODS: A systematic literature review was conducted using PubMed, CINAHL, Web of Science, Cochrane, Eric, Scopus, and PsycINFO databases in May 2023. Inclusion criteria were patient empowerment as an outcome supported by interactive digital tools expressed in study goal, methods or results, peer-reviewed studies published since 2010 in cancer care. Narrative synthesis was applied, and the quality of the studies was assessed following Joanna Briggs Institute checklists. RESULTS: Out of 1571 records screened, 39 studies published in 2011-2022 with RCT (17), single-arm trial (15), quasi-experimental (1), and qualitative designs (6) were included. A total of 30 interactive digital tools were identified to support empowerment (4) and related aspects, such as self-management (2), coping (4), patient activation (9), and self-efficacy (19). Significant positive effects were found on empowerment (1), self-management (1), coping (1), patient activation (2), and self-efficacy (10). Patient experiences were positive. Interactivity occurred with the tool itself (22), peers (7), or nurses (7), physicians (2), psychologists, (2) or social workers (1). CONCLUSION: Interactive digital tools have been developed extensively in recent years, varying in terms of content and methodology, favouring feasibility and pilot designs. In all of the tools, people with cancer are either active or recipients of information. The research evidence indicates positive outcomes for patient empowerment through interactive digital tools. Thus, even though promising, there still is need for further testing of the tools.

Changes in intention to use an interprofessional approach to decision-making following training: a cluster before-and-after study.

BACKGROUND: Health professionals in home care work in interprofessional teams. Yet most training in decision support assumes a one-on-one relationship with patients. We assessed the impact of an in-person training session in interprofessional shared decision-making (IP-SDM) on home care professionals' intention to adopt this approach. METHODS: We conducted a secondary analysis of a cluster stepped-wedge trial using a before-and-after study design. We collected data among home care professionals from November 2016 to February 2018 in 9 health and social services centers in Quebec, Canada. The intervention was an in-person IP-SDM training session. Intention to engage in IP-SDM pre- and post-session (dependent variable) was compared using a continuing professional development evaluation scale (CPD-Reaction) informed by the Godin's Integrated Behavioral Model for health professionals. We also assessed socio-demographic and psychosocial variables (beliefs about capabilities, beliefs about consequences, social influence and moral norm). We performed bivariate and multivariate analysis to identify factors influencing post-intervention intention. We used the STROBE reporting guidelines for observational studies to report our results. RESULTS: Of 134 respondents who provided complete pairs of questionnaires (pre- and post-), most were female (90.9%), mean age was 42 (± 9.3) years and 66.9% were social workers. Mean intention scores decreased from 5.84 (± 1.19) to 5.54 (± 1.35) (Mean difference = -0.30 ± 1.16; p = 0.02). Factors associated with higher intention post-intervention were social influence (ß = 0.34, p = 0.01) and belief about capabilities (ß = 0.49, p < 0.01). CONCLUSION: After in-person IP-SDM training, healthcare professionals' intention to engage in IP-SDM decreased. However, the scope of this decrease is probably not clinically significant. Due to their association with intention, beliefs about capabilities, which translate into having a sense of self-competency in the new clinical behavior, and social influences, which translate into what important others think one should be doing, could be targets for future research aiming to implement IP-SDM in home care settings.

Shared decision-making needs, barriers, and facilitators of patients with newly diagnosed advanced cancer in the hospital: a multi-level, mixed-methods study.

PURPOSE: Little is known about the shared decision-making (SDM) needs, barriers, and facilitators of patients with newly diagnosed advanced cancer in the hospital. Understanding this may improve SDM and cancer care quality in this vulnerable population. METHODS: A single-site, mixed-methods study of hospitalized patients with newly diagnosed advanced cancer, caregivers, and oncologists was conducted. After discharge, patient ± caregiver semi-structured interviews exploring SDM needs, barriers, and facilitators regarding their most important upcoming cancer-related decision were conducted. Oncologists were surveyed about patient knowledge and SDM needs using closed- and open-ended questions, respectively. Thematic analysis was performed for qualitative data with a focus on themes unique to or amplified by hospitalization. Descriptive statistics and the Chi-squared test were performed for quantitative data. RESULTS: Patients and caregivers reported high SDM needs surrounding treatment and prognostic information, leading to decisional conflict. Eight themes emerged: anticipated cancer treatment decisions, variable control preferences in decision-making, high cancer-related information needs and uncertainty, barriers and facilitators to information gathering during and post hospitalization, and decision-making facilitators. Among 32 oncologists, most (56%) reported patients were poorly informed about treatment and prognosis. Oncologists reported variable expectations about patient knowledge after hospitalization, facilitators to patient decision-making, and patient uncertainty while awaiting an outpatient oncologist appointment. CONCLUSION: Patients newly diagnosed with advanced cancer in the hospital have high SDM needs and experience decisional conflict. This may be due to barriers unique to or exacerbated by hospitalization. Further research is needed to develop strategies to address these barriers and enhance the facilitators identified in this study.

Analysis and mapping the research landscape on patient-centred care in the context of chronic disease management.

RATIONALE: Patient-centred care has emerged as a transformative approach in managing chronic diseases, aiming to actively involve patients in their healthcare decisions. AIMS AND OBJECTIVES: This study was conducted to analyse and map the research landscape on patient-centred care in the context of chronic disease management. METHODS: This study used Scopus to retrieve the relevant articles. The analysis focused on the growth pattern, highly cited articles, randomised clinical trials, patients and providers perspectives, facilitators and barriers, frequent author keywords, emerging topics, and prolific countries and journals in the field. RESULTS: In total, 926 research articles met the inclusion criteria. There was a notable increase in the number of publications over time. Cancer had the highest number of articles (n = 379, 40.9%), followed by diabetes mellitus, and mental health and psychiatric conditions. Studies on patient-centred care in diabetic patients received the highest number of citations. The results identified 52 randomised controlled trials that covered four major themes: patient-centred care for diabetes management, shared decision-making in mental health and primary care, shared decision-making in cancer care, and economic evaluation and cost-effectiveness. The study identified 51 studies that examined the impact of tools such as computer-based systems, decision aids, smartphone apps, and online tools to improve patient-centred outcomes. A map of author keywords showed that renal dialysis, HIV, and atrial fibrillation were the most recent topics in the field. Researchers from the United States contributed to more than half of the retrieved publications. The top active journals included "Patient Education and Counselling" and "Health Expectations". CONCLUSION: This study provides valuable insights into the research landscape of patient-centred care within the context of chronic diseases. The current study provided a comprehensive overview of the research landscape on patient-centred care, which can empower patients by raising their awareness about clinical experiences and outcomes.

Meaningful Patient Engagement in Adolescent and Young Adult (AYA) Cancer Research: A Framework for Qualitative Studies.

Over the last two decades, patient engagement in cancer research has evolved significantly, especially in addressing the unique challenges faced by adolescent and young adult (AYA) cancer populations. This paper introduces a framework for meaningful engagement with AYA cancer patient research partners, drawing insights from the "FUTURE" Study, a qualitative study that utilizes focus groups to explore the impact of cancer diagnosis and treatment on the sexual and reproductive health of AYA cancer patients in Canada. The framework's development integrates insights from prior works and addresses challenges with patient engagement in research specific to AYA cancer populations. The framework is guided by overarching principles (safety, flexibility, and sensitivity) and includes considerations that apply across all phases of a research study (collaboration; iteration; communication; and equity, diversity, and inclusion) and tasks that apply to specific phases of a research study (developing, conducting, and translating the study). The proposed framework seeks to increase patient engagement in AYA cancer research beyond a supplementary aspect to an integral component for conducting research with impact on patients.