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.

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).

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.

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.

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.

Mapping the evidence on dementia care pathways - A scoping review.

BACKGROUND: One way of standardizing practice and improving patient safety is by introducing clinical care pathways; however, such pathways are typically geared towards assisting clinicians and healthcare organizations with evidence-based practice. Many dementia care pathways exist with no agreed-upon version of a care pathway and with little data on experiences about their use or outcomes. The objectives of the review were: (1) to identify the dementia care pathway's purpose, methods used to deploy the pathway, and expected user types; (2) to identify the care pathway's core components, expected outcomes, and implications for persons with dementia and their care partners; and (3) determine the extent of involvement by persons with dementia and/or their care partners in developing, implementing, and evaluating the care pathways. METHODS: We systematically searched six literature databases for published literature in the English language in September 2023 utilizing Arskey and O'Malley's scoping review framework. RESULTS: The findings from the dementia care pathways (n = 13) demonstrated assistance in dementia diagnostic and management practices for clinicians and offered structured care processes in clinical settings. For this reason, these pathways emphasized assessment and interventional post-diagnostic support, with less emphasis on community-based integrated dementia care. CONCLUSION: Future dementia care pathway development can seek the involvement of persons with dementia and care partners in designing, implementing and evaluating such pathways, ensuring that outcome measures properly reflect the impact on persons with lived dementia experience and their care partners.

The psychological effects of research participation on people with dementia: findings from a German exploratory interview study.

The German National Dementia Strategy aims to engage people with dementia in research projects. However, the effects of such research participation on experience and behavior have been insufficiently explored. This study aimed to investigate the psychological effect of research participation on people living with dementia. In a qualitative, exploratory approach, guideline-based interviews were conducted with four persons with dementia who had served as co-researchers on an advisory board in a health services research study for 8 months at that time. The analysis revealed predominantly positive effects of research participation at all levels of experience and behavior. Most effects were reported by the co-researchers on a cognitive level. Both the perception of being competent and of making a positive contribution to oneself and/or others are key effects of research participation. The main effects on an emotional level were joy and wellbeing and on a behavioral level were positive social contacts and social communication. Sadness and insecurity represent the sole negative effects. Nuanced focal points of effects among the individual interviews were found. The results align with existing research highlighting the positive effects of participation on people with dementia. Through advancing an interdisciplinary perspective on their research involvement, we advocate for heightened attention to this topic within the realm of psychology.

Sustainability in Participatory Health: Applying WHO's Operational Framework.

The World Health Organization's Operational Framework for Climate Resilient and Low Carbon Health Systems outlines 10 broad components for the development and maintenance of health systems that respond effectively to climate-related challenges. This work analyses the WHO framework from a participatory health informatics perspective and identifies specific initiatives involving non-professionals that align with the framework. Citizen and patient participation in the development of climate-resilient health systems is not only possible but also necessary to maximize climate resiliency at the community and global levels.

How to Tell Whether Patients Engage and Use a Patient Portal - An Analysis of Five Functions.

BACKGROUND: The road to a more sustainable healthcare system includes creating a digital interface to the healthcare system that patients can use to engage in their health problems while outside the consultation room. The aim of the study was to evaluate trends in the use of functions in a patient portal and assess which functions were most likely to contribute to sustainable healthcare. STUDY DESIGN: Open, uncontrolled retrospective analysis of citizens' use of the patient portal. METHODS: Extraction and statistical analysis of log data. RESULTS: Log analysis revealed that patients engaged with the patient portal to make appointments, fill out and submit questionnaires, send messages to their care provider, inspect their laboratory results, and view notes about themselves. The functions that displayed a significantly increasing trend were the number of appointments made, the number of messages sent, and the number of checked test results. DISCUSSION: While portal engagement can reduce patient dependency on healthcare services, external factors also influence this outcome. Further research is needed to investigate which functions support healthcare sustainability and enhance patient empowerment, possibly through other study designs.

Simple, Office-Based Intervention Improves Patient-Provider Relationship in New Patient Hand Visits.

Purpose: Effective patient-doctor communication is linked to improved patient functional and physiological health status, better adherence to physician recommendations, and increased patient satisfaction. However, studies show that patients have difficulty understanding and recalling information discussed during a medical encounter. The purpose of this study was to assess patient engagement, patient-doctor communication, and patient-doctor interactions with the utilization of a patient encounter card to help aid in communication. Methods: New patients presenting to a single hand surgeon during an 8-month period between 2019 and 2020 were recruited for this study. Patients were recruited in pre and postintervention phases, defined by the rollout of a patient encounter card. Patients studied in the preintervention group were defined as the control population and experienced a typical office visit. The postintervention group experienced a typical office visit with the addition of a patient encounter card distributed to patients prior to meeting with the physician and screened by the physician during the visit to guide the encounter. Patient satisfaction and engagement surveys were collected during patient checkout process. Results: Two hundred eighty-seven patients (70% participation rate) were enrolled in the preintervention (145) and postintervention (142) phases. The utilization of a patient encounter card for setting a visit agenda resulted in a significant increase in self-reported patient engagement, improving from 74% to 88%. In both phases, 98% of patients felt that the physician listened well or very well and reported high levels of confidence in the provider being able to address their primary health concerns (72% and 79%, respectively). Overall, patient satisfaction was maintained pre and postintervention (96% and 98%, respectively). Conclusions: Use of the encounter card improved patients' feelings of engagement during their visits. Further research is required to determine the impact of these tools on providers' engagement and patient outcomes to improve quality of care in hand surgery. Type of study/level of evidence: Therapeutic II.

Patient and Provider Experiences With Compassionate Care in Virtual Physiatry: Qualitative Study.

BACKGROUND: Telemedicine in the realm of rehabilitation includes the remote delivery of rehabilitation services using communication technologies (eg, telephone, emails, and video). The widespread application of virtual care grants a suitable time to explore the intersection of compassion and telemedicine, especially due to the impact of COVID-19 and how it greatly influenced the delivery of health care universally. OBJECTIVE: The purpose of this study was to explore how compassionate care is understood and experienced by physiatrists and patients engaged in telemedicine. METHODS: We used a qualitative descriptive approach to conduct interviews with patients and physiatrists between June 2021 and March 2022. Patients were recruited across Canada from social media and from a single hospital network in Toronto, Ontario. Physiatrists were recruited across Canada through social media and the Canadian Association for Physical Medicine and Rehabilitation (CAPM&R) email listserve. Interviews were recorded and transcribed. Data were analyzed thematically. RESULTS: A total of 19 participants were interviewed-8 physiatrists and 11 patients. Two themes capturing physiatrists' and patients' experiences with delivering and receiving compassionate care, especially in the context of virtual care were identified: (1) compassionate care is inherently rooted in health care providers' inner intentions and are, therefore, expressed as caring behaviors and (2) virtual elements impact the delivery and receipt of compassionate care. CONCLUSIONS: Compassionate care stemmed from physiatrists' caring attitudes which then manifest as caring behaviors. In turn, these caring attitudes and behaviors enable individualized care and the establishment of a safe space for patients. Moreover, the virtual care modality both positively and negatively influenced how compassion is enacted by physiatrists and received by patients. Notably, there was large ambiguity around the norms and etiquette surrounding virtual care. Nonetheless, the flexibility and person-centeredness of virtual care cause it to be useful in health care settings.

Factors Associated with Patient Engagement in a Health and Social Needs Case Management Program.

INTRODUCTION: Many patients offered case management services to address their health and social needs choose not to engage. Factors that drive engagement remain unclear. We sought to understand patient characteristics associated with engagement in a social needs case management program and variability by case manager. METHODS: Between August 2017 and February 2021, 43,347 Medicaid beneficiaries with an elevated risk of hospital or emergency department use were offered case management in Contra Costa County, California. Results were analyzed in 2022 using descriptive statistics and multilevel logistic regression models to examine 1) associations between patient engagement and patient characteristics and 2) variation in engagement attributable to case managers. Engagement was defined as responding to case manager outreach and documentation of at least 1 topic to mutually address. A sensitivity analysis was performed by stratifying the pre-COVID-19 and COVID-19 cohorts. RESULTS: A total of 16,811 (39%) of eligible patients engaged. Adjusted analyses indicate associations between higher patient engagement and female gender, age 40 and over, Black/African American race, Hispanic/Latino ethnicity, history of homelessness, and a medical history of certain chronic conditions and depressive disorder. The intraclass correlation coefficient indicates that 6% of the variation in engagement was explained at the case manager level. CONCLUSIONS: Medicaid patients with a history of housing instability and specific medical conditions were more likely to enroll in case management services, consistent with prior evidence that patients with greater need are more receptive to assistance. Case managers accounted for a small percentage of variation in patient engagement.

The League: A person-centred approach to the development of social robotics for paediatric anxiety.

BACKGROUND: Social robots are promising tools to improve the quality of life of children and youth living with anxiety and should be developed based on the priorities of end users. However, pathways to include young people in patient-oriented research, particularly in the overlap between technology and mental health, have been historically limited. OBJECTIVE: In this work, we describe engagement with experts with lived experiences of paediatric anxiety in a social robotics research programme. We report the experiences of patient advisors in a co-creation process and identify considerations for other research groups looking to involve end users in technology development in the field of youth mental health. DESIGN: We engaged individuals with a lived experience of paediatric anxiety (current, recent past, or from a parent perspective) using three different models over the course of three years. Two initial patient partners were involved during project development, eight were engaged as part of an advisory panel ('the League') during study development and data analysis and four contributed as ongoing collaborators in an advisory role. League members completed a preparticipation expectation survey and a postparticipation experience survey. FINDINGS: Eight individuals from a range of anxiety-related diagnostic groups participated in the League as patient partners. Members were teenagers (n = 3), young adults aged 22-26 years who had connected with a youth mental health service as children within the past eight years (n = 3) or parents of children presently living with anxiety (n = 2). Preferred methods of communication, expectations and reasons for participating were collected. The League provided specific and actionable feedback on the design of workshops on the topic of social robotics, which was implemented. They reported that their experiences were positive and fairly compensated, but communication and sustained engagement over time were challenges. Issues of ethics and language related to patient-centred brain health technology research are discussed. CONCLUSIONS: There is an ethical imperative to meaningfully incorporate the voices of youth and young adults with psychiatric conditions in the development of devices intended to support their mental health and quality of life. PATIENT OR PUBLIC CONTRIBUTION: Six young people and two parents with lived experiences of paediatric anxiety participated in all stages of developing a research programme on social robotics to support paediatric mental health in a community context. They also provided input during the preparation of this manuscript.

Patient partner perspectives on compensation: Insights from the Canadian Patient Partner Survey.

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

Examining the Building Blocks of Health Behavior Change in Rheumatology Rehabilitation: A Theory-Driven Qualitative Study.

Purpose: To identify and describe behavior change techniques (BCTs) used in rehabilitation for patients with rheumatic and musculoskeletal diseases (RMDs), according to their own perceptions. Further, to examine patients' descriptions of their capability, opportunity, motivation, and readiness for health behavior change. Patients and Methods: Patients were adults in need of specialized, multidisciplinary rehabilitation services due to inflammatory rheumatic disease, systemic connective tissue disease, or fibromyalgia / chronic widespread pain. Semi-structured interviews of 21 patients were analyzed with deductive qualitative content analysis applying three theoretical frameworks: the Behavior Change Technique Taxonomy, the transtheoretical model and stages of change, and the capability, opportunity, and motivation model of behavior. Results: Forty-six BCTs aggregated within 14 BCT groups were identified used by either patients, healthcare professionals (HPs), or both. Goals and planning, feedback and monitoring, social support, shaping knowledge, repetition and substitution were most frequently used to facilitate behavior change. Twenty patients had reached the action stage and made specific lifestyle changes concerning more than half of their goals. Concerning other goals, 6 of these patients reported to be contemplating behavior change and 15 to be preparing for it. The rehabilitation process appeared to strengthen capability, opportunity, motivation, and the desired behaviors. Patient-reported barriers to behavior change were connected with restrictions in physical capability resulting from an unpredictable and fluctuating disease course, weakened motivation, and contextual factors, such as lack of access to healthcare support and training facilities, and high domestic care burden. Conclusion: The rehabilitation process seemed to strengthen individual and contextual prerequisites for behavior change and facilitate the use of required techniques and engagement in the desired behaviors. However, patients with RMDs may need prolonged support from HPs to integrate healthy lifestyle changes into everyday life. The findings can be used to optimize rehabilitation interventions and patients' persistent engagement in healthy behaviors.

Ethical considerations in public engagement: developing tools for assessing the boundaries of research and involvement.

Public engagement with research (PEwR) has become increasingly integral to research practices. This paper explores the process and outcomes of a collaborative effort to address the ethical implications of PEwR activities and develop tools to navigate them within the context of a University Medical School. The activities this paper reflects on aimed to establish boundaries between research data collection and PEwR activities, support colleagues in identifying the ethical considerations relevant to their planned activities, and build confidence and capacity among staff to conduct PEwR projects. The development process involved the creation of a taxonomy outlining key terms used in PEwR work, a self-assessment tool to evaluate the need for formal ethical review, and a code of conduct for ethical PEwR. These tools were refined through iterative discussions and feedback from stakeholders, resulting in practical guidance for researchers navigating the ethical complexities of PEwR. Additionally, reflective prompts were developed to guide researchers in planning and conducting engagement activities, addressing a crucial aspect often overlooked in formal ethical review processes. The paper reflects on the broader regulatory landscape and the limitations of existing approval and governance processes, and prompts critical reflection on the compatibility of formal approval processes with the ethos of PEwR. Overall, the paper offers insights and practical guidance for researchers and institutions grappling with ethical considerations in PEwR, contributing to the ongoing conversation surrounding responsible research practices.

Enhancing patient informed consent in elective skin cancer surgeries: a comparative study of traditional and digital approaches in a German public hospital.

BACKGROUND: This study aims to investigate the integration of modern sources of patient information, such as videos, internet-based resources, and scientific abstracts, into the traditional patient informed consent process in outpatient elective surgeries. The goal is to optimize the informed consent experience, enhance patient satisfaction, and promote shared decision making (SDM) between patients and surgeons. By exploring different patient informed consent formats and their impact on patient satisfaction, this research seeks to improve healthcare practices and ultimately enhance patient outcomes. The findings of this study will contribute to the ongoing efforts to improve the informed consent process in public hospitals and advance patient-centred care. METHODS: Data collection occurred at the day care clinic of a prominent German public hospital, forming an integral component of a prospective clinical investigation. The study exclusively focused on individuals who had undergone surgical intervention for skin cancer. For the purpose of meticulous data examination, the statistical software SPSS version 21 was harnessed. In the course of this study, a chi-square test was aptly employed. Its purpose was to scrutinize the nuances in patient experiences pertaining to informed consent across four distinct categories, viz., oral informed consent discussion (Oral ICD), written informed consent discussion (Written ICD), video-assisted informed consent discussion (video-assisted ICD), and digitally assisted informed consent discussion (digital-assisted ICD). The primary dataset of this inquiry was diligently gathered via a structured questionnaire administered to a targeted cohort of 160 patients. Within this sample, a balanced representation of genders was observed, encompassing 82 males and 78 females. Their collective age span ranged from 18 to 92 years, with an average age of 71 years. A randomized selection methodology was employed to include participants in this study during the period spanning from July 2017 to August 2018. RESULTS: Significant differences were observed across the groups for all research questions, highlighting variations in patient responses. Video-assisted and digital-assisted IC were rated as superior in patient satisfaction with information compared to written and oral IC. Demographic profiles of the four study groups were found to be comparable. CONCLUSION: The findings of this study indicate that the incorporation of digital technologies in the informed consent process can enhance patient understanding during outpatient elective skin cancer surgeries. These results have important implications for increasing patient satisfaction and improving the SDM process within the hospital environment.