Actions for mitigating the negative effects of patient participation in patient safety: a qualitative study.

BACKGROUND: Recent research within the context of Obstetrics shows the added value of patient participation in in-hospital patient safety. Notwithstanding these benefits, recent research within an Obstetrics department shows that four different negative effects of patient participation in patient safety have emerged. However, the approach to addressing these negative effects within the perspective of patient participation in patient safety is currently lacking. For this reason, the aim of this study is to generate an overview of actions that could be taken to mitigate the negative effects of patient participation in patient safety within an Obstetrics department. METHODS: This study was conducted in the Obstetrics Department of a tertiary academic center. An explorative qualitative interview study included sixteen interviews with professionals (N = 8) and patients (N = 8). The actions to mitigate the negative effects of patient participation in patient safety, were analyzed and classified using a deductive approach. RESULTS: Eighteen actions were identified that mitigated the negative effects of patient participation in patient safety within an Obstetrics department. These actions were categorized into five themes: 'structure', 'culture', 'education', 'emotional', and 'physical and technology'. These five categories reflect the current approach to improving patient safety which is primarily viewed from the perspective of professionals rather than of patients. CONCLUSIONS: Most of the identified actions are linked to changing the culture to generate more patient-centered care and change the current reality, which looks predominantly from the perspective of the professionals and too little from that of the patients. Furthermore, none of the suggested actions fit within a sixth anticipated category, namely, 'politics'. Future research should explore ways to implement a patient-centered care approach based on these actions. By doing so, space, money and time have to be created to elaborate on these actions and integrate them into the organizations' structure, culture and practices.

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.

Trial Participation in Neurodegenerative Diseases: Barriers and Facilitators: A Systematic Review and Meta-Analysis.

BACKGROUND AND OBJECTIVES: Clinical trials in neurodegenerative diseases often encounter selective enrollment and under-representation of certain patient populations. This delays drug development and substantially limits the generalizability of clinical trial results. To inform recruitment and retention strategies, and to better understand the generalizability of clinical trial populations, we investigated which factors drive participation. METHODS: We reviewed the literature systematically to identify barriers to and facilitators of trial participation in 4 major neurodegenerative disease areas: Alzheimer disease, Parkinson disease, amyotrophic lateral sclerosis, and Huntington disease. Inclusion criteria included original research articles published in a peer-reviewed journal and evaluating barriers to and/or facilitators of participation in a clinical trial with a drug therapy (either symptomatic or disease-modifying). The Critical Appraisal Skills Program checklist for qualitative studies was used to assess and ensure the quality of the studies. Qualitative thematic analyses were employed to identify key enablers of trial participation. Subsequently, we pooled quantitative data of each enabler using meta-analytical models. RESULTS: Overall, we identified 36 studies, enrolling a cumulative sample size of 5,269 patients, caregivers, and health care professionals. In total, the thematic analysis resulted in 31 unique enablers of trial participation; the key factors were patient-related (own health benefit and altruism), study-related (treatment and study burden), and health care professional-related (information availability and patient-physician relationship). When meta-analyzed across studies, responders reported that the reason to participate was mainly driven by (1) the relationship with clinical staff (70% of the respondents; 95% CI 53%-83%), (2) the availability of study information (67%, 95% CI 38%-87%), and (3) the use or absence of a placebo or sham-control arm (53% 95% CI 32%-72%). There was, however, significant heterogeneity between studies (all p < 0.001). DISCUSSION: We have provided a comprehensive list of reasons why patients participate in clinical trials for neurodegenerative diseases. These results may help to increase participation rates, better inform patients, and facilitate patient-centric approaches, thereby potentially reducing selection mechanisms and improving generalizability of trial results.

Informed consent of the patient for medical intervention for conducting biomedical research.

OBJECTIVE: Aim: is to find out the peculiarities of informed consent of the patient for medical intervention during biomedical research. PATIENTS AND METHODS: Materials and Methods: The dialectical method was used as a universal and general scientific method, which made it possible to consider the peculiarities of the content of the patient's informed consent. Using the logico-semantic method, the essence and features of biomedical research with the patient's participation were determined. The formal-legal method is used to analyze adaptation processes of biomedical research. System-structural method were applied when comparing the content of the patient's informed consent in separate legislation. The work also used such methods of cognition as comparative-legal, systemic-logical, and logical-legal. CONCLUSION: Conclusions: "Informed consent" includes not only the concept of consent itself, i.e. the free decision of a person, but also an explanation of a specific case or research procedure. And it largely depends on the specialist. Will he be able to convey and explain the patient's problem, illness, actions correctly, fully and in an accessible form? Yes, free consent is given by a person, but the doctor also influences this decision to some extent. Patients' freedom in choosing medical care methods is somewhat limited.

Assessing patient information needs for new antidiabetic medications to inform shared decision-making: A best-worst scaling experiment in China.

BACKGROUND: Shared decision-making (SDM) is a patient-centred approach to improve the quality of care. An essential requirement for the SDM process is to be fully aware of patient information needs. OBJECTIVES: Our study aimed to assess patient information needs for new antidiabetic medications using the best-worst scaling (BWS) experiment. METHODS: BWS tasks were developed according to a literature review and the focus group discussion. We used a balanced incomplete block design and blocking techniques to generate choice sets. The final BWS contains 11 attributes, with 6-choice scenarios in each block. The one-to-one, face-to-face BWS survey was conducted among type 2 diabetic patients in Jiangsu Province. Results were analyzed using count-based analysis and modelling approaches. We also conducted a subgroup analysis to observe preference heterogeneity. RESULTS: Data from 539 patients were available for analysis. The most desired information domain was the comparative effectiveness of new antidiabetic medications. It consists of the incidence of macrovascular complications, the length of extended life years, changes in health-related quality of life, the incidence of microvascular complications, and the control of glycated haemoglobin. Of all the attributes, the incidence of macrovascular complications was the primary concern. Patients' glycemic control and whether they had diabetes complications exerted a significant influence on their information needs. CONCLUSIONS: Information on health benefits is of critical significance for diabetic patients. Patients have different information needs as their disease progresses. Personalized patient decision aids that integrate patient information needs and provide evidence of new antidiabetic medications are worthy of being established. PATIENT OR PUBLIC CONTRIBUTION: Before data collection, a pilot survey was carried out among diabetic patients to provide feedback on the acceptability and intelligibility of the attributes.

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 .

Cognitive Behavioral Therapy: Strategies for Enhancing Treatment Engagement.

Treatment engagement, crucial in cognitive behavioral therapy (CBT) outcomes, centers on consistent implementation of between-session homework. This article explores clinical features affecting engagement, including challenges related to psychosocial stressors and negative core beliefs. Empirical evidence supports the positive causal and correlational relationship between homework and symptom reduction. Recent studies highlight the role of patient beliefs and suggest a collaborative approach in homework design. The CBT account of treatment engagement emphasizes clinician behavior, patient beliefs, and task specificity. The comprehensive model of homework in CBT involves careful planning, collaborative review, and addressing patient-specific challenges, providing valuable clinical insights.

Assessing early feasibility of a novel innovation to increase consumer partnership capability within an Australian health innovation organisation using a mixed-method approach.

OBJECTIVE: Engagement-capable health organisations recognise that consumer engagement (also known as patient engagement, consumer engagement, patient and public involvement) must occur at every level of the organisation if it is to be meaningful and genuine. Despite this aspiration, health organisations struggle to adopt, implement, and embody consumer engagement capability in a way that has yielded impact. The Partner Ring (PR) is an embedded model for building staff capability for consumer partnerships. It is hosted by an employed Patient Partner. PR was implemented at the Agency for Clinical Innovation in New South Wales, Australia. The aim of this study was to assess the feasibility (acceptability, demand and practicality) of this innovation to increase consumer engagement capability. DESIGN: One-group post-intervention mixed methods approach to assess feasibility. PARTICIPANTS: ACI staff engaged in the PR (n=40 of 89 members). DATA COLLECTION AND ANALYSIS: Qualitative data was collected through an artificial intelligence (AI)-driven interactive interview, with 40 responses received between 29 June and 12 July 2023. A framework analysis and Generative AI causal mapping were conducted to identify and visualise causal claims within the texts. Cost and session attendance collected from the same point in time supplemented the analysis. FINDINGS: Findings were categorised by the following feasibility constructs: acceptability, demand and practicality. Almost all the respondents indicated their intent to continue using the PR and outlined personal benefits and professional benefits. For example, (n=23, 57%) reacted positively to the psychological safety of the PR, and professionally people identified attendance increased their knowledge and skills (n=23, 57%). CONCLUSION: The PR is feasible and likely to be an acceptable innovation for building staff capability and consumer engagement skills across a large health system or organisation. It could be adopted or adapted by other jurisdictions.

Associations between knowledge of health issues and health care satisfaction and propensity to complain: a cross-sectional survey of adult men in Denmark.

OBJECTIVES: The objective of this study was to investigate associations between knowledge of health issues and healthcare satisfaction and propensity to complain including the association between knowledge and greater patient involvement. DESIGN: The present study is a secondary analysis of a larger cross-sectional case vignette survey. SETTING: Survey conducted in adult Danish men. PARTICIPANTS: Participants included 6755 men aged 45-70 years. INTERVENTIONS: Participants responded to a survey with scenarios illustrating prostate-specific antigen (PSA) testing and different information provision. PRIMARY AND SECONDARY OUTCOME MEASURES: Using Likert scales (scored 1-5), participants rated their satisfaction with the care described and their inclination to complain and responded to a short quiz (scored 0-3) assessing their knowledge about the PSA test. RESULTS: Satisfaction with healthcare increased with better quiz performance (Likert difference 0.13 (95% CI .07 to 0.20), p <0.001, totally correct vs totally incorrect responders) and correspondingly, the desire to complain significantly decreased (Likert difference -0.34 (95% CI 0.40 to -0.27), p <0.001). Respondents with higher education performed better (mean quiz score difference 0.59 (95% CI 0.50 to 0.67), p <0.001, most educated vs least educated). Responders who received information about the PSA test generally performed better (quiz score difference 0.41 (95% CI 0.35 to 0.47), p<0.001, neutral vs no information). Overestimation of PSA merits was more common than underestimation (7.9% vs 3.8%). CONCLUSIONS: Mens' knowledge of the benefits of screening varies with education, predicts satisfaction with care and the desire to complain, and may be improved through greater involvement in decision-making.

Patient, caregiver and other knowledge user engagement in consensus-building healthcare initiatives: a scoping review protocol.

INTRODUCTION: Patient engagement and integrated knowledge translation (iKT) processes improve health outcomes and care experiences through meaningful partnerships in consensus-building initiatives and research. Consensus-building is essential for engaging a diverse group of experienced knowledge users in co-developing and supporting a solution where none readily exists or is less optimal. Patients and caregivers provide invaluable insights for building consensus in decision-making around healthcare, policy and research. However, despite emerging evidence, patient engagement remains sparse within consensus-building initiatives. Specifically, our research has identified a lack of opportunity for youth living with chronic health conditions and their caregivers to participate in developing consensus on indicators/benchmarks for transition into adult care. To bridge this gap and inform our consensus-building approach with youth/caregivers, this scoping review will synthesise the extent of the literature on patient and other knowledge user engagement in consensus-building healthcare initiatives. METHODS AND ANALYSIS: Following the scoping review methodology from Joanna Briggs Institute, published literature will be searched in MEDLINE, EMBASE, CINAHL and PsycINFO databases from inception to July 2023. Grey literature will be hand-searched. Two independent reviewers will determine the eligibility of articles in a two-stage process, with disagreements resolved by a third reviewer. Included studies must be consensus-building studies within the healthcare context that involve patient engagement strategies. Data from eligible studies will be extracted and charted on a standardised form. Abstracted data will be analysed quantitatively and descriptively, according to specific consensus methodologies, and patient engagement models and/or strategies. ETHICS AND DISSEMINATION: Ethics approval is not required for this scoping review protocol. The review process and findings will be shared with and informed by relevant knowledge users. Dissemination of findings will also include peer-reviewed publications and conference presentations. The results will offer new insights for supporting patient engagement in consensus-building healthcare initiatives. PROTOCOL REGISTRATION: https://osf.io/beqjr.

Shared Decision Making in Oncology and Its Implementation in Cervical Cancer Management in the Philippines: A Narrative Review.

PURPOSE: Shared decision making (SDM) is an approach where clinicians and patients make decisions together using the best available evidence. Although much studied, recognized to be ethically imperative, and recommended in international health policies, it remains poorly implemented. In the Philippines, there are limited studies on patient decision making preferences and SDM. Practical guidance on the implementation of SDM or use of patient decision aids (PtDAs) is often not detailed in existing national clinical practice guidelines in oncology. METHODS: We performed a systematic search of Philippine literature on SDM in oncology and an iterative review of international literature on the philosophy and methods of SDM, the utility and effectiveness of PtDAs, and the facilitators and barriers to implementation or usage. We contextualized our review to the cervical cancer management and health service delivery in the Philippines. RESULTS: Local literature is limited to five scientific publications and two registered studies. International literature encompasses patient decisional preferences, the role of PtDAs and the standards for their development and evaluation, their effectiveness, and barriers and facilitators to their use in cancer-related decision making. We discussed the implications on the management of cervical cancer in the Philippines, challenges in health service delivery and standards, and SDM research. CONCLUSION: Local SDM research is limited. Our preliminary experience in a multicenter clinical trial in Manila on PtDA use in the framework of SDM in cervical cancer suggest good patient and clinician acceptability. Challenges to implementation such as unfavorable financial situations, urgency of clinical decisions, low patient or caregiver educational attainment, and poor integration of multidisciplinary and SDM in organizational workflows will be important when implementing SDM in different settings.

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.

Shared decision-making in psoriasis care: Evaluation of how patients' perception of clinicians' delivery of care changes by age and sex.

BACKGROUND: Shared decision-making (SDM) refers to a collaborative process in which clinicians assist patients in making medically informed, evidence-based decisions that align with their values and preferences. There is a paucity of literature on SDM in dermatology. OBJECTIVE: We aim to assess whether male and female psoriasis patients evaluate their clinicians' engagement in SDM differently across different age groups. METHODS: Cross-sectional study using data from the 2014-2017 and 2019 Medical Expenditure Panel Surveys (MEPS). RESULTS: A weighted total of 7,795,608 psoriasis patients were identified. SDM Scores ranged from 1 to 4, with 4 representing the most favorable patient evaluation of their clinicians' engagement in SDM. We conducted multivariate linear regression to compare mean SDM Scores in male psoriasis patients versus female psoriasis patients across different patient age groups. Female patients ages 60-69 perceived significantly greater clinician engagement in SDM compared to age-matched male patients (female patient perception of SDM 3.65 [95%CI:3.61-3.69] vs. male patient perception of SDM 3.50 [95%CI:3.43-3.58], p<0.005). The same trend of older female patients evaluating their clinicians' engagement in SDM significantly higher than their age-matched male counterparts exists for the age group >70 (p<0.005). No significant differences between male and female patients' evaluations of their clinicians' engagement in SDM were demonstrated in subjects younger than 60. All calculations were adjusted for demographic and clinical factors. CONCLUSIONS: Compared to older male psoriasis patients, older female psoriasis patients evaluated their clinicians to be more engaged in shared decision-making.

PPIE in a technical research study: Using public involvement to refine the concept and understanding and move towards a multidimensional concept of disability.

BACKGROUND: Disability is often an essentialised and oversimplified concept. We propose refining this while incorporating the multidimensional nature of disability by increasing the use of existing survey questions and their corresponding data to enrich, broaden and inform understandings of disability. METHODS: We combined patient and public involvement and engagement (PPIE) with focus groups and concept mapping to collaboratively map disability survey questions into conceptual models of disability with six members of the public with lived experiences of disability. RESULTS: Using reflexive thematic analysis, we identified three qualitative themes and eight subthemes through a series of four PPIE activities: (1) understanding concepts of disability based on individual experience, subthemes: 1.1-preference for the biopsychosocial model, 1.2-'Reviewing' instead of mapping survey questions and 1.3-comparing questions to real life; (2) consistency between understanding needs and implementing adjustments, subthemes: 2.1-connecting preparation and operation, 2.2-inclusivity and adjustments in activities and 2.3-feedback for improving activities and (3) real-world applications-targeted awareness raising, subthemes: 3.1-who, where, what and how to share activity findings and results, 3.2-sharing with human resource and equality, diversity and inclusion professionals. CONCLUSION: Members of the public who collaborated in these activities felt empowered, engaged and supported throughout this study. This approach offers a model for other researchers to cede power to the public over the research aspects typically reserved for researchers. PATIENT OR PUBLIC CONTRIBUTION: We involved members of the public with lived experience throughout this study-co-design, co-facilitation, collaboratively mapping the disability or disability-related survey questions into conceptual models of disability, evaluation of the activities, co-analysis and co-authorship.

Disparities in Patient Portal Engagement Among Patients With Hypertension Treated in Primary Care.

Importance: Patient portals are increasingly used for patient-clinician communication and to introduce interventions aimed at improving blood pressure control. Objective: To characterize patient portal use among patients with hypertension managed in primary care. Design, Settings, and Participants: This retrospective cohort study used electronic health records linked with patient portal log file data from a large, diverse Midwestern health care system. Patients with hypertension who had a primary care visit from January 1, 2021, to December 31, 2021, were included. The first visit in 2021 was considered the baseline visit; patient portal engagement was evaluated during the following year. Multivariate logistic regressions, presented as odds ratios (ORs) and 95% CIs, were used to evaluate associations between patient characteristics and patient portal engagement, adjusting for potential confounders. Exposures: Primary exposures included 4 sociodemographic factors routinely collected in the electronic health record: race and ethnicity, insurance, preferred language, and smoking status. Main Outcomes and Measures: Indicators of patient engagement with the patient portal included accessing the patient portal at least once, accessing the portal within 7 days of at least 50.0% of primary care physician (PCP) visits, frequent logins (<28 vs ≥28), messaging (<2 vs ≥2), and sharing home blood pressure readings. Results: Among 366 871 patients (mean [SD], 63.5 [12.6] years), 52.8% were female, 3.4% were Asian, 7.8% were Hispanic, 19.7% were non-Hispanic Black, 66.9% were non-Hispanic White, and 2.3% were of other race or ethnicity. During the 1-year study period starting in 2021, 70.5% accessed the patient portal at least once, 60.2% accessed around the time of their PCP visits, 35.7% accessed the portal frequently, 28.9% engaged in messaging, and 8.7% shared home blood pressure readings. Compared with White patients, non-Hispanic Black and Hispanic patients had lower odds of any access (Black: OR, 0.53; 95% CI, 0.52-0.54; Hispanic: OR, 0.66; 95% CI, 0.64-0.68), access around PCP visit time (Black: OR, 0.49; 95% CI, 0.48-0.50; Hispanic: OR, 0.62; 95% CI, 0.60-0.64), frequent access (Black: OR, 0.56; 95% CI, 0.55-0.57; Hispanic: OR, 0.71; 95% CI, 0.69-0.73), and messaging (Black: OR, 0.63; 95% CI, 0.61-0.64); Hispanic: OR, 0.71; 95% CI, 0.69-0.73). Conclusions and Relevance: This cohort study of patients with hypertension found clear sociodemographic disparities in patient portal engagement among those treated in primary care. Without special efforts to engage patients with portals, interventions that use patient portals to target hypertension may exacerbate disparities.

Asking those who know their needs best: A framework for active engagement and involvement of childhood cancer survivors and parents in the process of psychosocial research-A workshop report.

BACKGROUND: Patient and public involvement and engagement (PPIE) in healthcare research is crucial for effectively addressing patients' needs and setting appropriate research priorities. However, there is a lack of awareness and adequate methods for practicing PPIE, especially for vulnerable groups like childhood cancer survivors. AIMS: This project aimed to develop and evaluate engagement methods to actively involve pediatric oncological patients, survivors, and their caregivers in developing relevant research questions and practical study designs. METHODS AND RESULTS: An interdisciplinary working group recruited n = 16 childhood cancer survivors and their caregivers to work through the entire process of developing a research question and a practicable study design. A systematic literature review was conducted to gather adequate PPIE methods which were then applied and evaluated in a series of three workshop modules, each lasting 1.5 days. The applied methods were continuously evaluated, while a monitoring group oversaw the project and continuously developed and adapted additional methods. The participants rated the different methods with varying scores. Over the workshop series, the participants successfully developed a research question, devised an intervention, and designed a study to evaluate their project. They also reported increased expertise in PPIE and research knowledge compared to the baseline. The project resulted in a practical toolbox for future research, encompassing the final workshop structure, evaluated methods and materials, guiding principles, and general recommendations. CONCLUSION: These findings demonstrate that with a diverse set of effective methods and flexible support, actively involving patients, survivors, and caregivers can uncover patients' unmet disease-related needs and generate practical solutions apt for scientific evaluation. The resulting toolbox, filled with evaluated and adaptable methods (workbook, Supplement 1 and 2), equips future scientists with the necessary resources to successfully perform PPIE in the development of health care research projects that effectively integrate patients' perspectives and address actual cancer-related needs. This integration of PPIE practices has the potential to enhance the quality and relevance of health research and care, as well as to increase patient empowerment leading to sustainable improvements in patients' quality of life.

Supporting patient self-management: A cross-sectional and prospective cohort study investigating Patient Activation Measure (PAM) and Clinician Support for PAM scores as part of a multi-centre haemodialysis breakthrough series collaborative.

BACKGROUND: Patient self-management, measured by the Patient Activation Measure (PAM), is associated with reduced healthcare utilisation and better health-related quality of life. Self-management in haemodialysis (HD) is challenging and may require support from clinicians with positive attitudes towards self-management, measured by the Clinician Support for PAM (CSPAM). OBJECTIVES: To assess whether kidney staff CSPAM scores are: 1) associated with their centre's patient PAM scores and 2) modifiable through staff coaching. METHODS: Baseline PAM and CSPAM and six-month CSPAM were collected from HD patients and kidney staff respectively in seven UK kidney centres as part of a six-month breakthrough series collaborative (BTSC), which trained kidney staff in supporting patient independence with HD tasks. Firstly, multivariable linear regression analyses adjusted for patient characteristics were used to test the baseline association between centre-level staff CSPAM scores and patient PAM scores. Secondly, paired univariate and unpaired multivariable linear regression analyses were conducted to compare staff CSPAM scores at baseline and six months. RESULTS: 236 PAM questionnaires (mean score = 55.5) and 89 CSPAM questionnaires (median score = 72.6) were analysed at baseline. There was no significant association between centre-level mean CSPAM scores and PAM scores in univariate analyses (P = 0.321). After adjusting for patient-level characteristics, increasing centre-level mean CSPAM score by 1 point resulted in a non-significant 0.3-point increase in PAM score (0.328 (95% CI: -0.157 to 0.812; P = 0.184). Paired (n = 37) and unpaired (n = 174) staff analyses showed a non-significant change in CSPAM scores following the BTSC intervention (mean change in CSPAM score in unpaired analysis = 1.339 (95% CI: -1.945 to 4.623; P = 0.422). CONCLUSIONS: Lack of a significant: 1) association between CSPAM and PAM scores and 2) change in CSPAM scores suggest that modifying staff beliefs alone is less likely to influence patient self-management, requiring co-production between patients and staff.

Do Shared Decision-Making and Patient Decision Aids Take Patient's Preferences Seriously?

Most clinical guidelines for the assessment and management of atrial fibrillation emphasize the importance of decision support provided by Patients Decision Aids, but they are to be used and evaluated only in the context of Shared Decision-Making. Detailed examination of 10 clinical decision support tools reveals that many do not engage with patient's preferences at all. Only two take them seriously in terms of their formation, elicitation and processing, aimed at identifying the optimal personalised decision for the patient. This failure is traced to a reluctance to accept the ontological nature of preferences, as instantiations of comparative magnitudes, and to set them in an analytical framework that facilitates their transparent integration with individualised evidence.

Taking the Patient's Preferences into Account in the Anticoagulation Decision: Largely Lip-Service?

Clinical guidelines for the assessment and management of atrial fibrillation emphasize the importance of taking the patient's preferences into account. A detailed examination of those from the National Institute for Excellence in Health and Social Care (NICE) raise serious questions about whether the recommendations embed preferences about crucial trade-offs that pre-empt those of the patient; do not stress the need to provide them with the information on option consequences necessary for them to become an informed patient; and characterise them as 'concordant' or 'discordant' rather than independently valid. American and European guidelines do not differ significantly in these respects.