Revisiting the hospital-issued gown in hospitalizations from a locus of control and patient-centered care perspectives: a call for design thinking.

Introduction: Patient-centered care (PCC) is the preferred health policy approach that emphasizes responding to individual patient preferences, wishes, and needs. PCC requires active patient engagement. While there has been extensive research on physicians' robes, there is limited research on hospital-issued patient gowns during hospitalizations. How does the gown affect the cognitive-emotional experience of hospitalized patients? How is the gown associated with PCC? Methods: The sample of this cross-sectional study consisted of 965 patients who were hospitalized at least once during the past year in a tertiary hospital. Measures were previously published. Results: The gown was strongly associated with lack of control and increased distress, and was negatively associated with patient proactiveness, engagement, and taking responsibility for self-management of chronic illness. Compared to male patients, female patients wearing the gown had stronger negative emotions and cognitively strong associations with the external locus of control, which inhibited engagement. Discussion: The hospital gown is an unacknowledged barrier to achieving PCC, inhibits patient engagement, and reflects the paradoxes of inadvertently excluding patients' needs from hospital practice. The hospital gown must be modified to protect the patient's voice and enhance engagement. Policymakers are called to apply design thinking to facilitate patient participation in decision-making to accord hospital clothing to PCC and improve healthcare delivery.

Patient Engagement in a Mobile App-Based Rehabilitation Program for Total Hip or Knee Arthroplasty: Secondary Data Analysis of a Randomized Controlled Trial.

BACKGROUND: Health care professionals use mobile apps to support patients' rehabilitation after total hip or knee arthroplasty. Understanding patient engagement in such mobile health interventions can help tailor these interventions to better support patients. OBJECTIVE: This study aimed to investigate patient engagement in a mobile app-based arthroplasty rehabilitation program and to investigate the association between patient engagement and their characteristics. METHODS: Data were extracted from a pool of 42 participants in the experimental arm of a randomized controlled trial that used a mobile app (WeChat [Tencent Holdings Limited])-based program to support patients' rehabilitation after total hip or knee arthroplasty. The primary outcomes were the number of days the participants accessed the program and completed recommended rehabilitation tasks. Secondary outcomes included data on the participants' posts on a discussion forum, messages sent by the participants, access to the program components, and reading and sharing the program content. Generalized linear models were used to analyze the association between patient engagement and personal characteristics. RESULTS: The participants reported in a rehabilitation diary accessing the program on a mean of 5.2 (SD 2) days per week and completing recommended rehabilitation tasks on a mean of 6.5 (SD 0.8) days per week. The majority (31/42, 74%) posted on the discussion forum, with a mean of 18.1 (SD 21.2) posts. Most participants (37/42, 88%) sent messages to health care professionals, with a mean of 14 (SD 15.9) messages. The program components were visited for a total of 525 times. The program content was read 898 times and shared 82 times in total. Generalized linear models showed that both primary outcomes, the number of days the participants accessed the program (B=6.46, 95% CI 1.98-15.35; χ21=11.1, P=.001) and the number of days they completed rehabilitation tasks (B=2.65, 95% CI 0.45-5.48; χ21=5.7, P=.02), were positively associated with having a high school education or above. In addition, the number of posts on the discussion forum was positively associated with living with family, having a high school education or above, undergoing total knee arthroplasty, having comorbidities, and the score of self-efficacy but was negatively associated with age. The number of messages sent by the participants was positively associated with having a high school education or above, having comorbidities, and the score of self-efficacy. CONCLUSIONS: Patient engagement in mobile arthroplasty rehabilitation is associated with their education level, cohabitation status, age, type of surgery, presence of comorbidities, and sense of self-efficacy. Program developers can consider these characteristics and use strategies, such as family involvement, in the design of mobile arthroplasty rehabilitation programs to enhance patient engagement in such interventions. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12621000867897; https://tinyurl.com/mtdw25fp.

A mobile serious game about diabetes self-management: Design and evaluation.

Type 2 Diabetes Mellitus (T2DM) is a chronic condition that requires ongoing self-management and education. In recent years, there has been a growing interest in utilizing mobile serious games as a tool for patient education and engagement. This article presents the development of DiaPo, a mobile serious game designed to improve self-management education for patients with T2DM. DiaPo integrates gamification techniques to increase patient engagement and motivation while providing essential information about disease management. The development of DiaPo followed a structured design process, utilizing the Analysis, Design, Development, Implementation, and Evaluation (ADDIE) educational system. This systematic approach allowed for the integration of best practices in educational game design and diabetes care. The development team consisted of experts in medical informatics, game design, and diabetes care, ensuring a multidisciplinary approach to the game's creation. The game's narrative focuses on a T2DM patient who earns positive points for making healthy lifestyle choices and negative points for poor ones. This gamified approach aims to reinforce positive behaviors and provide immediate feedback on negative ones. Interactive animations confirm or deny options selected by the player, further enhancing the learning experience. DiaPo offers a flexible and adaptable platform suitable for diverse audiences, promoting inclusiveness and accessibility in T2DM education. DiaPo represents a novel approach to self-management education for patients with T2DM, utilizing gamification techniques and a multidisciplinary design process to create an engaging and informative mobile serious game. By promoting inclusiveness and accessibility, DiaPo has the potential to empower patients with T2DM to take an active role in their disease management. As the field of mobile serious games continues to evolve, DiaPo stands as a promising tool for improving T2DM education and patient outcomes.

Consideration for Health Disparities in Value Assessment Frameworks.

Background: Cost-effectiveness analysis (CEA) compares interventions based on relative value and is an integral part of value assessment. Despite recommendations for economists to consider disparities in CEAs that impact health-care resource allocation decisions, the perception held by stakeholders is that value assessment frameworks are inconsistent in practice. Methods: We reviewed value assessment reports produced by a United States (US)-based value assessment organization to identify how patients and caregiver input may contribute to how the organization considers health disparities. We purposefully extracted and categorized information relevant to health disparities from report sections on Patient and Caregiver Perspectives and Contextual Considerations and Other Potential Benefits to represent the data acknowledged by the organization's patient engagement efforts. We conducted a thematic analysis of the text in these sections and mapped to a health disparities framework endorsed by the National Institute on Minority Health and Health Disparities (NIMHD). Results: Nineteen evidence reports were included in our analysis. We identified 30 equity-related themes from external stakeholder perspectives or acknowledged in the report and 17 equity-related themes that reflect the actions taken by the economic model developers to address health disparities as a formal part of the CEA. We found examples of the value assessment organization explicitly considering health disparities in cost-effectiveness estimates. However, explicit considerations were not consistent across reports and were not necessarily aligned with patient and caregiver input during model development or consistent with the organization's own contextual considerations. Conclusion: Our findings highlight the need for a systematic approach for the consideration of health disparities within a value assessment framework and more transparency around how final cost-effectiveness approaches are determined.

Value/health technology assessment (V/HTA) organizations help review and evaluate the cost-effectiveness of new treatments compared to current therapies for different diseases. The methods used are sometimes informed by patient and caregiver input, but not always. In this study, we review reports developed by a US-based V/HTA and map the information the organization collected from patients and caregivers to a commonly used health disparities framework. We found that while many reports address common areas of health disparities, there was not a systematic and transparent approach of collecting or implementing this information.

Development of MyREADY Transition BBD Mobile App, a Health Intervention Technology Platform, to Improve Care Transition for Youth With Brain-Based Disabilities: User-Centered Design Approach.

BACKGROUND: Transition from pediatric to adult health care varies and is resource intensive. Patient-centered health information technology (HIT) interventions are increasingly being developed in partnership with patients. OBJECTIVE: This study aims to develop an internet-based mobile app intervention for patients with brain-based disabilities to improve transition in care readiness. METHODS: The app was designed for patients aged 15 to 17 years with brain-based disabilities having the ability to use a mobile app. A multidisciplinary team, an industry partner, and a patient and family advisory council was assembled. We hypothesized that existing tools could be migrated into the app to address education, empowerment, and navigation. We used cognitive learning theory to support chapters targeting transition in care skill sets. We used the agile iterative methodology to engage stakeholders. RESULTS: We developed a novel MyREADY Transition HIT platform. An electronic mentor supported cognitive learning with messaging, quizzes, rewards, and videos. We used gaming to guide navigation through a fictitious health care city. Adapting existing tools was achieved by the patient and family advisory council requesting personalization. Our iterative design required time-consuming back-end technology management. Developing the platform took 24 months instead of our grant-approved 12 months, impacting the onset of the planned trial within the allotted budget. CONCLUSIONS: A novel patient-centered HIT platform to improve health care transition was successfully developed in partnership with patients and industry. Careful resource management was needed to achieve timely delivery of the end product, flagging the cautious planning required to deliver HIT tools in time for the much-needed trials informing their clinical application. TRIAL REGISTRATION: ClinicalTrials.gov NCT03852550; https://clinicaltrials.gov/study/NCT03852550.

Democratising artificial intelligence in healthcare: community-driven approaches for ethical solutions.

The rapid advancement and widespread adoption of artificial intelligence (AI) has ushered in a new era of possibilities in healthcare, ranging from clinical task automation to disease detection. AI algorithms have the potential to analyse medical data, enhance diagnostic accuracy, personalise treatment plans and predict patient outcomes among other possibilities. With a surge in AI's popularity, its developments are outpacing policy and regulatory frameworks, leading to concerns about ethical considerations and collaborative development. Healthcare faces its own ethical challenges, including biased datasets, under-representation and inequitable access to resources, all contributing to mistrust in medical systems. To address these issues in the context of AI healthcare solutions and prevent perpetuating existing inequities, it is crucial to involve communities and stakeholders in the AI lifecycle. This article discusses four community-driven approaches for co-developing ethical AI healthcare solutions, including understanding and prioritising needs, defining a shared language, promoting mutual learning and co-creation, and democratising AI. These approaches emphasise bottom-up decision-making to reflect and centre impacted communities' needs and values. These collaborative approaches provide actionable considerations for creating equitable AI solutions in healthcare, fostering a more just and effective healthcare system that serves patient and community needs.

A Tale of 102,726 Messages: Characterizing the Modern Urologist's Portal Message Burden After Common Urologic Surgeries.

INTRODUCTION: We aimed to characterize patient portal messaging use after urologic surgery to identify administrative burden and evaluate postoperative clinical associations. METHODS: Epic was queried for all urologic surgeries performed at the Mayo Clinic enterprise between 2019 and 2022. Data from the highest volume procedures were extracted including patient-generated portal messages to their provider and emergency department (ED) visits within 6 months of surgery. Factors associated with portal users and message volume, as well as the impact of portal use on risk of subsequent ED visit, were evaluated. RESULTS: We analyzed data from 23,621 urologic procedures, which generated 102,726 patient portal messages within 6 months of surgery. We found that 55% of our cohort sent at least 1 message. Stratifying by subspecialty, endourologic surgeries generated the fewest number of messages per surgery (3.83; SD, 8.76), whereas female pelvic medicine and reconstructive surgeries yielded the most (6.05; SD, 10.92). Younger age, female sex, and White race were associated with increased portal utilization. Multivariable time-to-event analysis revealed a 33% reduction in the risk of ED presentation within 90 days after surgery for patients using the patient portal compared with those who did not. CONCLUSIONS: While only half of patients sent portal messages after surgery, active users showed a 33% reduction in ED visits, suggesting its potential to reduce health care utilization. Encouraging broader portal adoption can improve outcomes. However, the message burden for urologists necessitates solutions. Resource allocation should prioritize strategies to help urologists manage messages while preserving the established clinical benefits.

Improving the management of hospital waiting lists by using nudges in letters: A Randomised controlled trial.

OBJECTIVE: A commonly adopted intervention to help to reduce wait times for hospital treatment is administrative validation, where administrators write to patients to check if a procedure is still required. The did not return (DNR) rate to validation letters is substantial. We tested whether the DNR rate was reduced by introducing nudges to validation letters. METHODS: Participants from eight public hospitals (N = 2855; in 2017) in Ireland were randomized to receive an existing (control group) or a redesigned validation letter including nudges (intervention group). RESULTS: Participants in the intervention group were less likely not to return it than those in the control group, OR = .756, SE = .069, p = .002. Control and intervention group DNR rates were 23.97% and 19.24%. This is equivalent to 1 in 5 non-responders changing their behaviour because of the redesigned letter. CONCLUSIONS: The redesigned letter increased patient compliance with the validation process. The redesign has subsequently been adopted by public hospitals in Ireland.

Improving access and quality of primary healthcare through women and adolescents' user committees: A mixed-methods case study in Kinshasa, Democratic Republic of the Congo.

BACKGROUND: Patient engagement is seen as a fundamental strategy for achieving quality patient-centred care, especially in community-based primary healthcare. Despite growing interest in patient engagement in Sub-Saharan Africa, few patient engagement initiatives have been identified, and those often are limited to lower levels of engagement, in participation in health research or in health system improvement. With the aim of giving a voice to under-represented community groups in healthcare governance, the Access to Health services in Kinshasa (ASSK) project supported the implementation of primary health services user committees in the Democratic Republic of the Congo, designed to enable the representation of two user groups with specific unmet sexual and reproductive health (SRH) needs: women and adolescents. AIMS AND METHODS: Using a mixed-method case study design combining quantitative secondary data (from the national health management information system-DHIS2) and qualitative data from two research World Café (WC1: Women user committees (WUC) n = 55; WC2: Adolescents user committee (AUC) n = 63), this paper looks at the implementation facilitators and barriers, and at the results of this initiative. RESULTS: Women and adolescent members of the user committees highlighted that their participation resulted in increased knowledge of SRH and their related rights, as well as in their 'soft skills' such as communication and leadership. In addition, participants reported greater transparency and accountability on the part of the community primary health centres (e.g. by displaying fees for procedures to counter over-billing). Ultimately, WUC and AUC were associated with improved health practices in the community such as increased use of SRH services (increase of 613% for Makala and 160% for Maluku II), including adolescent family planning (increase of 320% for Makala and 12% for Maluku II) and assisted childbirth for women15-49 years old (increase of 283% for Makala and 23% for Maluku II)). CONCLUSIONS: Patient user committees for specific marginalised or under-represented groups appear to be an effective way of improving the quality of primary health care services. Further research is needed to better understand how to maximise its potential.

Understanding Patient Portal Uses and Needs: Cross-Sectional Study in a State Fair Setting.

This study identified 22 features that are used and the needs for desired features/data in patient portals that enable online access to medical records. Data collected at a Midwestern state fair indicates that while most participants used patient portals, use and desirability of specific features varied widely. Identified needs for enhanced data access, portal functionality, and usability can be used to inform effective patient portal design.

Virtual Waiting Room: The New Narrative of Waiting in Oncology Care.

This conceptual study introduces the "virtual waiting room," an innovative, interactive, web-based platform designed to enhance the waiting experience in oncology by providing personalized, educational, and supportive content. Central to our study is the implementation of the circular entry model, which allows for non-linear navigation of health information, empowering patients to access content based on their immediate needs and interests. This approach respects the individual journeys of patients, acknowledging the diverse pathways through which they seek understanding and manage their health. The virtual waiting room is designed not only to support patients but also to facilitate stronger communication and shared understanding between patients, caregivers, and families. By providing a shared digital space, the platform enables caregivers and family members to access the same information and resources, thereby promoting transparency and collective knowledge. This shared access is crucial in managing the emotional complexities of oncology care, where effective communication can significantly impact treatment outcomes and patient well-being. Furthermore, the study explores how the circular entry model within the virtual waiting room can enhance patient autonomy and engagement by offering customized interactions based on user feedback and preferences. This personalized approach aims to reduce anxiety, improve health literacy, and prepare patients more effectively for clinical interactions. By transforming passive waiting into active engagement, the virtual waiting room turns waiting time into a meaningful, informative period that supports both the psychological and informational needs of patients and their support networks.

Lessons in clinical reasoning - pitfalls, myths, and pearls: a case of persistent dysphagia and patient partnership.

OBJECTIVES: Diagnostic excellence underscores the patient-centered diagnosis and patient engagement in the diagnostic process. In contrast to a patient-centered diagnosis, a doctor-centered diagnosis with a lack of patient engagement may inhibit the diagnostic process due to the lack of responsibility, disrupted information, and increased effect of cognitive biases, particularly in a situation where multiple physicians are involved. In this paper, we suggest a promising idea to enhance patient engagement in the diagnostic process by using written information by a patient about their perspective and experience, which can fill the gaps needed for diagnosis that doctors cannot find alone. CASE PRESENTATION: A 38-year-old woman developed chest pain, which gradually worsened during the following two years. For two years, she was evaluated in multiple departments; however, no definitive diagnosis was made, and her condition did not improve. During this evaluation, she searched her symptoms and image findings online. She reached a possible diagnosis of 'esophageal achalasia.' Still, she could not tell her concerns to any physicians because she felt that her concerns were not correctly recognized, although she showed her notes that her symptoms were recorded. She finally consulted the department of internal medicine, where her notes and previous test results were thoroughly reviewed. The final diagnosis of esophageal achalasia was confirmed. CONCLUSIONS: Doctors must organize an environment where patients can freely express their thoughts, emotions, and ideas regarding their diagnosis. Cogenerating visit notes using patient input through written communication can be a promising idea to facilitate patient engagement in the diagnostic process.

Motivation for patient engagement in patient safety: a multi-perspective, explorative survey.

BACKGROUND AND OBJECTIVES: Despite increasing calls for more patient engagement in patient safety, limited knowledge remains on what actually motivates key stakeholders in healthcare to promote patient engagement. We therefore set out to survey key stakeholders of patient engagement in patient safety (i.e., patients, healthcare professionals, and managers). We aimed to identify and explore stakeholder's distinct and shared motives for patient engagement. METHODS: A stepwise Delphi method was applied, utilizing semi-structured online interviews for determination of stakeholder motives for patient engagement in patient safety. In a subsequent online survey, statements were evaluated and identified. 34 subject-matter experts from all relevant stakeholder groups completed the online interviews and 33 the online survey. We used content analysis approaches for qualitative and descriptive analyses for quantitative measures. Further, we evaluated the consensus on distinct and shared motives across stakeholder groups. RESULTS: Seven key motives for patient engagement in patient safety were identified. Major motives attributed to patients were: (1) To improve experiences and care outcomes for oneself, as well as (2) for future patients, (3) to express gratitude and appreciation, (4) to cope successfully with treatment-related emotions. A motive shared by patients and professionals was (5) to contribute actively to improved delivery of healthcare. To optimize patient safety, costs, and care processes (6) was shared by professionals and managers. Lastly, (7) to improve patient-provider relationships was jointly shared by all stakeholder groups. For four motives (1, 2, 6, 7) consensus was established. CONCLUSIONS: In order to unlock the full potential of future interventions in patient engagement, a deeper understanding of stakeholder motives is essential. We identified a set of distinct and shared motives for patient engagement across relevant stakeholder groups. Our findings may inform future interventions in patient engagement that take account of the motivational foundations and aspirations of all stakeholders who are key for the success for collaborative patient safety and care improvements. TRIAL REGISTRATION: ID DRKS00031837 (Date May 8, 2023).

Patient engagement as a collaborative process in a large Dutch COVID-19 vaccination study (RECOVAC) - insight into the contribution of patient engagement and learnings for the future.

BACKGROUND: The need for patient engagement in health research has been increasingly acknowledged and accepted in recent years. However, implementation is still limited due to lack of evidence on its value and lack of guidance on how to implement patient engagement. This study aims to provide insight into the contribution of patient engagement in the RECOVAC project, which studied COVID-19 vaccination in kidney patients, and formulate concrete practice-based action perspectives for patient engagement. METHODS: We used a qualitative participatory mixed methods approach, based on the Patient Engagement Monitoring and Evaluation (PEME) framework. Patient engagement and data collection were based on the Reflexive Monitoring in Action (RMA) approach. Data collection included participant observations, open ended questionnaires and interactive reflection sessions. Qualitative analysis was done via a thematic approach. RESULTS: We have described the process of patient engagement systematically, provided insight in its value and found that there is a need for clear aims, expectations and preparations from the start of the engagement process. We have shown that reflection throughout the process is of utmost importance and the same applies to clear communication between researchers and patient representatives. By being part of the consortium patient representatives had direct access to information, straight from the source, on for example the vaccination schedule and medication availability and had indirect influence on decisions made by the National Institute for Public Health and the Environment (RIVM) on preventive measures and treatment against COVID-19. Having experienced patient representatives is important, otherwise training needs to be provided. We also found that patient engagement had impact on conduct and outcomes of research activities itself and may have impact on future research and patient engagement activities in general. CONCLUSION: Patient engagement has changed the course of the project. Concrete practice-based action perspectives have been formulated, which are already being implemented by the Dutch Kidney Patients Association (NVN). Studying patient engagement in a high pace project with high public interest has resulted in lessons learned and will help prepare and implement patient involvement in future research projects. CLINICAL TRIAL REGISTRATION: The RECOVAC studies in which the patient engagement took place are registered at clinicialtrial.gov (NCT04741386 registration date 2021-02-04, NCT04841785 registration date 2021-03-22 and NCT05030974 registration date 2021-08-20).

This article is about the extensive engagement of patients in a scientific research project and what that engagement adds to the project. Although researchers acknowledge the importance of engagement of patients in research projects, it is not happening very often, Because there is not enough scientific evidence on the value of patient engagement and not enough guidance for researcher on how to implement it in their research. We used the Patient Engagement Monitoring and Evaluation (PEME) framework and qualitative participatory mixed methods research to provide insight into patient involvement in the RECOVAC project, which studied COVID-19 vaccination in kidney patients. We also formulated practical guidance for researchers who want to engage patients in their research. We describe the process of patient engagement in the RECOVAC project; what went well and what could be improved. We found that it is important to prepare well, keep reflecting on the engagement process throughout the project with all stakeholders of the project, communicate clearly and have experienced patient representatives involved or have training available for them. Patient engagement had impact on the conduct and outcome of the research activities itself and on activities outside of the project (e.g., doctors changing their conversations with their patients). We can conclude that involving patients changed the project and its outcomes to better fit with the needs of patients. A guideline has been made and is already implemented by the Dutch Kidney Patients Association. The lessons learned from this project will help researchers involve patients in their future projects.

From Innovator Result-driven to Multi-actor Impact-oriented Public-Private Partnerships: Integrating the Patient Perspective.

Public-Private Partnerships (PPPs) have been crucial in medicine research and development (R&D) for decades. Initially, PPPs involved private and academic innovators working in bilateral collaborations to advance pharmaceutical innovation. Later, a precompetitive open innovation environment was created, where multiple public and private innovators collaborated on mutual interests. The entry of regulators and patient interest organizations into PPPs has triggered a third shift from an innovator result-driven to a multi-actor impact-oriented partnership model. Using the second Innovative Medicines Initiative program (IMI2) as an example, this chapter focuses on the increasing roles of patient interest organizations in PPPs in roughly the last decade.Most IMI2 partnerships focused on raising awareness and sharing information tailored to patient needs (listener role) and inviting patients to share their experiences and needs (co-thinker role). Many partnerships also integrated the patient perspective by implementing patient advisory bodies (advisor role) or including patients as equal partners in steering the project (partner role). Notably, partnerships like EUPATI and PARADIGM showed that patient interest organizations can lead initiatives, especially those aiming at advancing patient engagement across the medicine R&D lifecycle (decision-maker role). While the overall impact of patient involvement in the IMI2 program is still being assessed, it has exposed many innovators and regulators to the patient perspective and created a community of patient experts with access to tools and guidelines for meaningful involvement.The PPP model continues to evolve, shifting from a treatment-only to a comprehensive diagnosis, treatment, and monitoring approach by incorporating digital and medical technology actors. This development, alongside continued patient and public integration could revolutionize the R&D and accessibility of new treatments and diagnostics.

Reported impact and protective factors of the care partner role during persistent critical illness: a content analysis.

BACKGROUND: Patients with persistent critical illness experience prolonged multi-system morbidity, functional impairments, and chronic conditions. As a result, these patients have prolonged intensive care unit admissions. If discharged, they return home with long-term medical dependencies. Care partners take on a variety of physical, mental health, cognitive, and social roles to support the provision of care for these patients. There is limited evidence, however, of the impact of being a care partner for this patient population during hospitalization. METHODS: A qualitative descriptive study was conducted to explore the impact care provision on care partners for patients experiencing persistent critical illness. Patients who have or have had persistent critical illness and care partners were recruited from two inpatient units in a single community academic hospital in Toronto, Canada to participate in semi-structured interviews. Data was analyzed using a team-based inductive content analysis. RESULTS: Seven (43.8%) participants were patient survivors, and nine (56.3%) were care partners. Patients and care partners reported physical, socio-emotional, and social stress as impacts of care provision during persistent critical illness hospitalization. Care partners identified several protective strategies that they used to mitigate the impacts of care provision on them such as seeking external mental health support and boundary setting. Features of formalized and care partner programs were also identified and suggest that these programs can be protective of care partner values, mitigate feelings of helplessness and stress, and may improve relationships between the family members who are in the care partner role and the healthcare team. CONCLUSIONS: This study identified physical, socio-emotional, and social stress related impacts of care provision on care partners of patients with persistent critical illness during hospitalization. Additionally, this study identified protective factors initiated by care partners to mitigate the reported stresses of the role, as well as protective features of a care partner program. The results provide a better understanding supportive features of care partner programs that are specific to the experiences and needs of persistent critical illness and add to the growing body of evidence about how to provide equitable access to care during and post hospitalization.

Enhancing patient-oriented research training: participant perceptions of an online course.

BACKGROUND: Patient-oriented research is now widely regarded as key to improving health systems and patient outcomes. This shift toward meaningful patient involvement in health research has sparked a growing interest in patient-oriented research training across Canada. Yet some barriers to participation, including distance and scheduling constraints, may impede the provision of in-person patient-oriented research training. Virtual course delivery options may help surmount those barriers, as well as offer unique pedagogical advantages. OBJECTIVE: To help increase patient-oriented research training uptake, the research team adapted the Canadian Institutes of Health Research's (CIHR) Strategy for Patient-Oriented Research's Foundations for Patient-Oriented Research course to a virtual format. The course consists of three modules, which focus respectively on patient-oriented research, health research methods, and teamwork skills. The current evaluation of this virtual delivery examines how a diverse set of participants received the online course. METHODS: Course participants from a variety of professional backgrounds, including researchers, patients, clinicians, and policy decision-makers, were recruited from across Canada to participate in the adapted course. Participant and facilitator feedback was solicited via online surveys that were distributed shortly after the delivery of each module. RESULTS: Over the span of the current project, the online course was delivered seven times across Canada. A total of 189 learners and 12 facilitators participated in the course. We received 89 completed feedback surveys in total. These included a total of 78 responses from learners, with 22 on Module 1, 32 on Module 2, and 24 on Module 3, in addition to 11 responses from facilitators. Overall, participants and facilitators were very satisfied with the course, indicating a successful adaptation from traditional to online delivery. Survey respondents were especially pleased with the course's co-learning elements, which exposed them to fresh perspectives and real patient voices, as well as ample opportunity for discussion. Some participants offered recommendations for minor course revisions. Future iterations of the course will reflect participant and facilitator feedback to enhance accessibility via minor changes to course format (e.g., shorter live sessions), content (e.g., more concrete examples), and workload (e.g., reduced pre-work requirements). CONCLUSIONS: Sustainable and effective health care depends on health research that includes active partnerships across diverse populations. These collaborative relationships are fostered by strong capacity in patient-oriented research, which in turn hinges on widely accessible training opportunities. This online course overcomes common barriers to face-to-face training and offers the accessible, inclusive training environment required for sustained progress in patient-oriented research.

In the past, patients were only involved in health research as study subjects and were excluded from membership on the research team. Today, it is the norm to involve patients and other non-researchers, such as clinicians and policy makers, as full, active partners in health research projects. This approach is called patient-oriented research, and is regarded as essential for good health care. In 2016, the Canadian Institutes of Health Research (CIHR) developed a course in patient-oriented research that helps people develop the skills they need to work together on a team with researchers, patients, caregivers, care providers, policy makers, and others. However, logistical challenges such as travel distance and scheduling conflicts may create barriers to in-person participation. Our research team adapted CIHR's course in patient-oriented research for online delivery, which can help overcome these challenges and provide additional educational benefits. We delivered the online course seven times to diverse groups of participants from across Canada, including researchers, patients, clinicians, and policy makers. A total of 189 participants completed at least one of the three course modules. In this article, we examine the results of 89 completed feedback surveys (78 from learners and 11 from facilitators). Overall, the feedback was very positive, with participants appreciating the opportunity to learn from real patient experiences in an inclusive environment. We also received suggestions for improvement, such as reducing pre-work and using more concrete examples, which will be incorporated into future versions of the course. This evaluation shows that this course was successfully adapted for online delivery and offers a valuable opportunity for building skills in patient-oriented research.

Designing an integrated care pathway for spondyloarthritis: A Lean Thinking approach.

INTRODUCTION: Integrated care pathways (ICPs) are crucial for delivering individualised care. However, the development of ICPs is challenging and must be well designed to provide the expected benefits. Regarding this, healthcare organisations are increasingly adopting management systems based on Lean Thinking to improve their organisational processes by eliminating non-value-added steps. This study elucidates the process and evaluates the impact of applying Lean Thinking to redesign an ICP for patients with spondyloarthritis, a chronic inflammatory disease affecting young adults. METHODS: A multidisciplinary team was assembled and trained in Lean Thinking. Patient's perspective was gathered through a focus group. Guided by an expert methodologist, the team constructed a value stream map of the entire care pathway and analysed each step. Five work streams were defined to increase value at each step, leading to targeted process improvements. Key process and outcome metrics were collected and compared in 2-month baseline and post-implementation audits. RESULTS: A total of 118 patients were included in the baseline audit (September-October 2022), and 116 in the post-implementation audit (January-February 2023). Process redesign resulted in statistically significant improvements (p < 0.05), including a reduction in the mean number of hospital visits per patient over a 2-month period from 2.54 (SD = 0.93) to 1.84 (SD = 0.79), an increase in complementary exams scheduled on the same day (81.4% to 94.8%) and an increase in baseline disease and treatment education (from 22.2% to 84.2% and from 18.2% to 84.6%, respectively). Regarding standardisation of clinical practice, there were significant increases in collecting data for medical records on composite activity indices (76.3% to 95.7%), reporting of pharmacological treatment adherence (68.6% to 94%) and providing nonpharmacological recommendations (31.3% to 95.7%). CONCLUSIONS: The application of Lean Thinking to redesign the spondyloarthritis ICP led to significant improvements in outpatient appointment scheduling, reduced patient hospital visits, improved interdepartmental coordination and standardised clinical practice.

CASCADE: A Community-Engaged Action Model for Generating Rapid, Patient-Engaged Decisions in Clinical Research.

Background: Integrating patient and community input is essential to the relevance and impact of patient-focused research. However, specific techniques for generating patient and community-informed research decisions remain limited. Here, we describes a novel CASCADE method (Community-Engaged Approach for Scientific Collaborations and Decisions) that was developed and implemented to make actionable, patient-centered research decisions during a federally funded clinical trial. Methods: The CASCADE approach includes 7 key pillars: (1) identifying a shared, specific, and actionable goal; (2) centering community input; (3) integrating both pre-registered statistical analyses and exploratory "quests"; (4) fixed-pace scheduling, supported by technology; (5) minimizing opportunities for cognitive biases typical to group decision making; (6) centering diversity experiences and perspectives, including those of individual patients; (7) making decisions that are community-relevant, rigorous, and feasible. Here, we implemented these pillars within a three-day CASCADE panel, attended by diverse members of a research project team that included community interest-holders. The goal of our panel was to identify ways to improve an algorithm for matching patients to specific types of telehealth programs within an active, federally funded clinical trial. Results: The CASCADE panel was attended by 27 participants, including 5 community interest-holders. Data reviewed to generate hypotheses and make decisions included (1) pre-registered statistical analyses, (2) results of 12 "quests" that were launched during the panel to answer specific panelist questions via exploratory analyses or literature review, (3) qualitative and quantitative patient input, and (4) team member input, including by staff who represented the target patient population for the clinical trial. Panel procedures resulted in the generation of 18 initial and 12 final hypotheses, which were translated to 19 decisional changes. Conclusions: The CASCADE approach was an effective procedure for rapidly, efficiently making patient-centered decisions during an ongoing, federally funded clinical trial. Opportunities for further development will include exploring best-practice structural procedures, enhancing greater opportunities for pre-panel input by community interest-holders, and determining how to best standardize CASCADE outputs. Trial registration: The CASCADE procedure was developed in the context of NCT05999448.

Establishment of a patient and public involvement and engagement group to support clinical trials in Pakistan: Initial lessons learned.

BACKGROUND: Patient and public involvement and engagement (PPIE) in clinical trials is increasingly recognized as vital for ensuring research relevance and accessibility. Despite its proven benefits, PPIE remains limited, particularly in low- and middle-income countries, and more examples of effective strategies for involvement are needed. This commentary outlines the establishment of a PPIE group for clinical trials in a lower-middle-income country setting with limited research infrastructure. MAIN BODY: We established Pakistan's first ever PPIE group for clinical trials within a new clinical trials unit at Ziauddin University in Karachi. The objectives of our project were focused on group formation, redesign of informed consent documents for trials, and dissemination of trial results to the public. Recruitment strategies involved referrals from clinicians and existing collaborators as well as engagement at public events, distribution of advertising leaflets and social media posts. Ten potential members were selected based on motivation, commitment and ability to contribute critically, with six members continuing their involvement long-term. An existing tool designed to establish the access needs of public partners was adapted to our project to help us document and account for members' expectations and support requirements. The process of using the tool enabled deep engagement, clarified roles, and fostered trust between coordinators and group members. Patient and public members gained confidence about the legitimacy of the project and felt more comfortable participating in the first group meeting. Lessons learned emphasize the importance of wide-ranging engagement efforts and transparent discussions about expectations to build effective collaborative relationships. CONCLUSION: Our experience demonstrates the feasibility of establishing a PPIE group for clinical trials in Pakistan and highlights strong public interest for research involvement. The use of a formal tool to document needs, prior experiences and expectations encouraged relationship-building and helped coordinators make relevant accommodations for members. This account contributes to the growing body of literature on effective PPIE practices, emphasizing the value of tailored support and transparent communication in facilitating meaningful public involvement in clinical trials.

Working together with patients and members of the public has the potential of making clinical trials better, more person-centered and relevant. Unfortunately, partnerships between trial researchers and the public are still uncommon. It is not known what the best ways are to involve the public in clinical trials, especially when it comes to non-Western populations. We set up the first-ever patient and public involvement and engagement group to support clinical trials in Pakistan. In this commentary, we share our initial experiences of successfully establishing the group and the two main lessons we learned. Ten group members were identified by widely advertising our project to doctors, community organizations, patients and their carers at our hospital. Before the first group meeting, two coordinators met with each potential member to discuss and document their interests, expectations and needs. Both researchers and group members felt that these discussions were a good use of their time and helped make the project a success. The first main lesson learned from our experience was that enough time, funding, staff and resources are needed to identify members and build meaningful collaborative partnerships. The second main lesson learned was that honest discussions are needed at the very beginning of a collaboration about expectations. Our experience shows that involving patients and members of the public in clinical trials in Pakistan is possible and we hope it inspires and helps other researchers in their patient and public engagement efforts.