Re-Purposing the Ordering of Routine Laboratory Tests in Hospitalized Medical Patients (RePORT): protocol for a multicenter stepped-wedge cluster randomised trial to evaluate the impact of a multicomponent intervention bundle to reduce laboratory test over-utilization.

BACKGROUND: Laboratory test overuse in hospitals is a form of healthcare waste that also harms patients. Developing and evaluating interventions to reduce this form of healthcare waste is critical. We detail the protocol for our study which aims to implement and evaluate the impact of an evidence-based, multicomponent intervention bundle on repetitive use of routine laboratory testing in hospitalized medical patients across adult hospitals in the province of British Columbia, Canada. METHODS: We have designed a stepped-wedge cluster randomized trial to assess the impact of a multicomponent intervention bundle across 16 hospitals in the province of British Columbia in Canada. We will use the Knowledge to Action cycle to guide implementation and the RE-AIM framework to guide evaluation of the intervention bundle. The primary outcome will be the number of routine laboratory tests ordered per patient-day in the intervention versus control periods. Secondary outcome measures will assess implementation fidelity, number of all common laboratory tests used, impact on healthcare costs, and safety outcomes. The study will include patients admitted to adult medical wards (internal medicine or family medicine) and healthcare providers working in these wards within the participating hospitals. After a baseline period of 24 weeks, we will conduct a 16-week pilot at one hospital site. A new cluster (containing approximately 2-3 hospitals) will receive the intervention every 12 weeks. We will evaluate the sustainability of implementation at 24 weeks post implementation of the final cluster. Using intention to treat, we will use generalized linear mixed models for analysis to evaluate the impact of the intervention on outcomes. DISCUSSION: The study builds upon a multicomponent intervention bundle that has previously demonstrated effectiveness. The elements of the intervention bundle are easily adaptable to other settings, facilitating future adoption in wider contexts. The study outputs are expected to have a positive impact as they will reduce usage of repetitive laboratory tests and provide empirically supported measures and tools for accomplishing this work. TRIAL REGISTRATION: This study was prospectively registered on April 8, 2024, via ClinicalTrials.gov Protocols Registration and Results System (NCT06359587). https://classic. CLINICALTRIALS: gov/ct2/show/NCT06359587?term=NCT06359587&recrs=ab&draw=2&rank=1.

Unveiling the factors influencing public knowledge and behaviours towards medication errors in Jordan: a cross-sectional study.

BACKGROUND: Medication errors are preventable incidents resulting from improper use of drugs that may cause harm to patients. They thus endanger patient safety and offer a challenge to the efficiency and efficacy of the healthcare system. Both healthcare professionals and patients may commit medication errors. METHODS AND OBJECTIVES: A cross-sectional, observational study was designed using a self-developed, self-administered online questionnaire. A sample was collected using convenience sampling followed by snowball sampling. Adult participants from the general population were recruited regardless of age, gender, area of residence, medical history, or educational background in order to explore their practice, experience, knowledge, and fear of medication error, and their understanding of this drug-related problem. RESULTS: Of the 764 participants who agreed to complete the questionnaire, 511 (66.9%) were females and 295 (38.6%) had a medical background. One-fifth of participants had experienced medication errors, with 37.7% of this segment reporting these medication errors. More than half of all medication errors (84, 57.5%) were minor and thus did not require any intervention. The average anxiety score for all attributes was 21.2 (The highest possible mean was 36, and the lowest possible was 0). The highest level of anxiety was seen regarding the risk of experiencing drug-drug interactions and the lowest levels were around drug costs and shortages. Being female, having no medical background, and having experience with medication errors were the main predictors of high anxiety scores. Most participants (between 67% and 92%) were able to recognise medication errors committed by doctors or pharmacists. However, only 21.2 to 27.5% of participants could recognise medication errors committed by patients. Having a medical background was the strongest predictor of knowledge in this study (P < 0.001). CONCLUSION: The study revealed that the prevalence of self-reported medication errors was significantly high in Jordan, some of which resulted in serious outcomes such as lasting impairment, though most were minor. Raising awareness about medication errors and implementing preventive measures is thus critical, and further collaboration between healthcare providers and policymakers is essential to educate patients and establish effective safety protocols.

'The Listening Series': increasing equity, diversity and inclusion in patient and public involvement and engagement for policy research by listening to and learning from under-represented groups.

BACKGROUND: Policy research aims to provide evidence to inform government policy decisions about health and social care. Engaging and involving the public and patients in this work is widely recognised as essential. Research funders prioritise equality, diversity and inclusion (EDI) in patient and public involvement and engagement (PPIE), but people who are most likely to experience poor outcomes are also those least likely to be involved in research. This paper describes our experience of setting out to understand how to overcome barriers to EDI in PPIE in the research carried out by the National Institute for Health and Care Research (NIHR) Policy Research Unit in Maternal and Neonatal Health and Care (PRU-MNHC), in a PPIE consultation project we called The Listening Series. METHODS: We convened five video-recorded online discussion groups involving 20 individuals advocating for groups who are under-represented in our research. Those taking part included people working with Black and Asian women and families, young parents, those from socially deprived backgrounds, and women and families with physical and learning disabilities. Discussions focussed on practical solutions to addressing challenges to people being excluded, and how to improve EDI in our research. LEARNING AND REFLECTION: Five key themes were identified: 'build trust'; 'involve us from the beginning'; 'show us impact'; 'use clear, appropriate and inclusive communication'; and 'imagine life in our shoes'. We used the learning to create a guidance document for researchers and an accompanying 15-minute film. We also took practical steps to embed the learning strategically by expanding our Task Group for PPIE in the PRU-MNHC to include four Listening Series invitees with a remit to champion EDI in our research and ensure that it is embedded in our PPIE activities. We continue to reflect on and work to address the associated challenges. CONCLUSIONS: The Listening Series helped us rethink our processes for inclusion to go beyond traditional methods of involvement and engagement. The themes identified pose challenges that require time, resource and empathic engagement from researchers to be meaningfully resolved. This has implications for policy makers and research funders who need to consider this in their processes.

WHAT WE KNOW: It is important that health care researchers involve patients and the public from a wide range of social and ethnic backgrounds in research, but we know that this often does not happen. We are a group of researchers and patient/public representatives, working in research to improve care for pregnant women and babies. We wanted to find out how to involve people from more diverse backgrounds in our research. WHAT WE DID: We organised five online discussion groups with 20 people working with Black and Asian families, young parents, those from socially deprived backgrounds and parents with physical or learning disabilities. We asked them what we should do to involve a wider range of people in our research. We called this The Listening Series. We summarised the most important things people said in a written guide for researchers and a short film. We then asked people who had been invited to take part in The Listening Series to join us to develop new ways of working together. WHAT WE LEARNED: The five themes we identified were: 'build trust'; 'involve us from the beginning'; 'show us impact'; 'use clear, appropriate and inclusive communication'; and 'imagine life in our shoes'. In summary, researchers need to take the time to build trusting relationships with patients and the public; actively listening and learning from them. This can be challenging for researchers and patient representatives. Research funders need to allow time and money for this to happen in a meaningful way.

The global patient-reported outcomes for multiple sclerosis initiative: bridging the gap between clinical research and care - updates at the 2023 plenary event.

Significant advancements have been achieved in delineating the progress of the Global PROMS (PROMS) Initiative. The PROMS Initiative, a collaborative endeavor by the European Charcot Foundation and the Multiple Sclerosis International Federation, strives to amplify the influence of patient input on MS care and establish a cohesive perspective on Patient-Reported Outcomes (PROs) for diverse stakeholders. This initiative has established an expansive, participatory governance framework launching four dedicated working groups that have made substantive contributions to research, clinical management, eHealth, and healthcare system reform. The initiative prioritizes the global integration of patient (For the purposes of the Global PROMS Initiative, the term "patient" refers to the people with the disease (aka People with Multiple Sclerosis - pwMS): any individual with lived experience of the disease. People affected by the disease/Multiple Sclerosis: any individual or group that is affected by the disease: E.g., family members, caregivers will be also engaged as the other stakeholders in the initiative). insights into the management of MS care. It merges subjective PROs with objective clinical metrics, thereby addressing the complex variability of disease presentation and progression. Following the completion of its second phase, the initiative aims to help increasing the uptake of eHealth tools and passive PROs within research and clinical settings, affirming its unwavering dedication to the progressive refinement of MS care. Looking forward, the initiative is poised to continue enhancing global surveys, rethinking to the relevant statistical approaches in clinical trials, and cultivating a unified stance among 'industry', regulatory bodies and health policy making regarding the application of PROs in MS healthcare strategies.

Typology of solutions addressing diagnostic disparities: gaps and opportunities.

OBJECTIVES: Diagnostic disparities are preventable differences in diagnostic errors or opportunities to achieve diagnostic excellence. There is a need to summarize solutions with explicit considerations for addressing diagnostic disparities. We aimed to describe potential solutions to diagnostic disparities, organize them into an action-oriented typology with illustrative examples, and characterize these solutions to identify gaps for their further development. METHODS: During four human-centered design workshops composed of diverse expertise, participants ideated and clarified potential solutions to diagnostic disparities and were supported by environmental literature scan inputs. Nineteen individual semi-structured interviews with workshop participants validated identified solution examples and solution type characterizations, refining the typology. RESULTS: Our typology organizes 21 various types of potential diagnostic disparities solutions into four primary expertise categories needed for implementation: healthcare systems' internal expertise, educator-, multidisciplinary patient safety researcher-, and health IT-expertise. We provide descriptions of potential solution types ideated as focused on disparities and compare those to existing examples. Six types were characterized as having diagnostic-disparity-focused examples, five as having diagnostic-focused examples, and 10 as only having general healthcare examples. Only three solution types had widespread implementation. Twelve had implementation on limited scope, and six were mostly hypothetical. We describe gaps that inform the progress needed for each of the suggested solution types to specifically address diagnostic disparities and be suitable for the implementation in routine practice. CONCLUSIONS: Numerous opportunities exist to tailor existing solutions and promote their implementation. Likely enablers include new perspectives, more evidence, multidisciplinary collaborations, system redesign, meaningful patient engagement, and action-oriented coalitions.

Doctors', Patients' and Physician Associates' Perceptions of the Physician Associate Role in the Emergency Department.

INTRODUCTION: The Emergency Department (ED) has seen increased patient attendance and difficulty meeting demands. New healthcare professions such as Physician Associates (PAs) are being utilised to complement the existing medical workforce. Despite the growth of their professions in the United Kingdom, little evidence is available about the perceptions of their roles. OBJECTIVE: This study aims to provide evidence of doctors', PAs' and patients' perceptions of the PA role in the UK ED. METHODS: A mixed methods approach consisted of the following: 1. An online exploratory survey of ED doctors at one English ED over 1 month (February-March 2022). 2. Post consultation semi-structured patient questionnaires over 2 weeks (April 2022). 3. Semi-structured virtual interviews with ED consultants across the four regions of the United Kingdom (3 months in 2022). 4. Semi-structured virtual interviews with ED PAs across the four regions of the United Kingdom (3 months in 2022). The analysis methods that were used included frequency counts and percentages from closed questions, and hybrid thematic analysis of free text and interview transcripts. RESULTS: Four ED consultants and four ED PAs across the United Kingdom were interviewed. Twenty-eight ED doctors participated in the online survey. Fifty-seven patients completed the post consultation questionnaire. Four main themes (PAs being fit for purpose; patient recognition of PAs, PAs providing continuity of care, and future PAs and regulation) were deduced as per the General Medical Council, Good Medical Practice domains (knowledge, skills and development; patients, partnership and communication; colleagues, culture and safety; and trust and professionalism). Other subthemes were induced via hybrid thematic analysis. In this study, doctors and patients had mixed comments about the role of PAs. Most of them were positive as doctor participants perceived PAs to be knowledgeable, highly skilled, with mostly good communication skills, team players, providing continuity of care and overall being fit for purpose. However, some doctor participants commented negatively about PAs for providing little quality healthcare and being inexperienced. There was a desire for career progression among the PA participants and a need to work to their full potential. Although the clinicians of this study displayed a clear understanding of the PA role in the ED, a high frequency of surveyed patients mistook PAs for doctors. It was suggested that future PAs could complete a postqualification programme in emergency medicine, combine roles, be paid on an alternative scale and be formally regulated. CONCLUSION: In this study, mixed views were expressed by ED consultants, ED junior doctors and patients regarding the role of the PA in the ED. Stakeholders can use the information presented to develop a better understanding of the perceptions of the PA role within the UK ED. PATIENT OR PUBLIC CONTRIBUTION: The Patient and Public Involvement and Engagement (PPIE) group, led by Healthwatch, made significant contributions to the study's design by providing valuable feedback on the information sheets and consent forms utilised. The patients' responses helped guide the study's direction and shape its future work. As part of the dissemination activities, the study findings was shared with both the PPIE team and Healthwatch media production team.

Compassionate Curiosity: Mitigating the Effects of Bias Through Motivational Interviewing.

There is strong evidence that the implicit biases of health care professionals affect the treatment of patients, and that minority and other marginalized patients are disproportionately harmed. Assumptions made about patient knowledge or lack thereof function as judgments that are prone to bias, which then affect the education and advice imposed upon patients. We review how the motivational interviewing (MI) approach to patient engagement includes components of evidence-based bias-mitigating strategies, such as understanding circumstances from the patient's point of view, and therefore we propose that the MI approach can reduce the impact of bias in patient care.

Embedding the Use of Patient Multimedia Educational Resources Into Cardiac Acute Care: Prospective Observational Study.

BACKGROUND: Multimedia interventions may play an important role in improving patient care and reducing the time constraints of patient-clinician encounters. The "MyStay Cardiac" multimedia resource is an innovative program designed to be accessed by adult patients undergoing cardiac surgery. OBJECTIVE: The purpose of this study was to evaluate the uptake of the MyStay Cardiac both during and following the COVID-19 pandemic. METHODS: A prospective observational study design was used that involved the evaluation of program usage data available from the digital interface of the multimedia program. Data on usage patterns were analyzed for a 30-month period between August 2020 and January 2023. Usage patterns were compared during and following the lifting of COVID-19 pandemic restrictions. Uptake of the MyStay Cardiac was measured via the type and extent of user activity data captured by the web-based information system. RESULTS: Intensive care unit recovery information was the most accessed information, being viewed in approximately 7 of 10 usage sessions. Ward recovery (n=124/343, 36.2%), goal (n=114/343, 33.2%), and exercise (n=102/343, 29.7%) information were routinely accessed. Most sessions involved users exclusively viewing text-based information (n=210/343, 61.2%). However, in over one-third of sessions (n=132/342, 38.5%), users accessed video information. Most usage sessions occurred during the COVID-19 restriction phase of the study (August 2020-December 2021). Sessions in which video (P=.02, phi=0.124) and audio (P=.006, phi=0.161) media were accessed were significantly more likely to occur in the restriction phase compared to the postrestriction phase. CONCLUSIONS: This study found that the use of digital multimedia resources to support patient education was well received and integrated into their practice by cardiac nurses working in acute care during the COVID-19 pandemic. There was a pattern for greater usage of the MyStay Cardiac during the COVID-19 pandemic when access to the health service for nonfrontline, essential workers was limited.

Impact of Remote Blood Pressure Monitoring Device Connectivity on Engagement Among Pregnant Individuals Enrolled in the Delfina Care Platform: Observational Study.

Unlabelled: User engagement with remote blood pressure monitoring during pregnancy is critical to optimize the associated benefits of blood pressure control and early detection of hypertensive disorders of pregnancy. In our study population of pregnant individuals, we found that connected blood pressure cuffs, which automatically sync measures to a monitoring platform or health record, increase engagement (2.13 [95% CI 1.36-3.35] times more measures per day) with remote blood pressure monitoring compared to unconnected cuffs that require manual entry of measures.

Uncovering Nursing Communication Strategies and Relational Styles to Foster Patient Engagement in Oncology: A Scoping Review.

Nurses play an active role in fostering engagement of oncological patients, and, therefore, adopting effective communication and interpersonal skills is crucial. However, the nurse-patient relationship and communication strategies are frequently undervalued. This scoping review aims to address this gap with a twofold objective: (1) to explore the existing literature to identify communication strategies and relational styles employed by nurses to promote patient engagement in non-pediatric oncology patients; (2) to assess current knowledge on this topic to determine the need for future research. The search was conducted on different scientific databases and grey literature. The review was conducted following the methodology outlined in the Joanna Briggs Institute guidance for scoping reviews and the updated version of the PRISMA-ScR Checklist. Thirteen articles were included in the study. The studies in total enrolled 863 participants. Four clusters of nursing interventions were identified, encompassing communication strategies and relational styles of varying complexity, along with ten categories of general outcomes emerging from their implementation. This study summarizes the current knowledge regarding nursing communication strategies and relational styles used to promote patient engagement in oncological patients. Further research is needed, to evaluate and integrate the researched techniques, tools, and interventions for future clinical nursing practice.

Is It Still Time for Safety Walkaround? Pilot Project Proposing a New Model and a Review of the Methodology.

Background and Objectives: Healthcare facilities are complex systems due to the interaction between different factors (human, environmental, management, and technological). As complexity increases, it is known that the possibility of error increases; therefore, it becomes essential to be able to analyze the processes that occur within these contexts to prevent their occurrence, which is the task of risk management. For this purpose, in this feasibility study, we chose to evaluate the application of a new safety walkaround (SWA) model. Materials and Methods: A multidisciplinary working group made up of experts was established and then the subsequent phases of the activity were divided into three stages, namely the initial meeting, the operational phase, and the final meeting, to investigate knowledge regarding patient safety before and subsequently through visits to the department: the correct compilation of the medical record, adherence to evidence-based medicine (EBM) practices, the overall health and the degree of burnout of the various healthcare professionals, as well as the perception of empathy of staff by patients. Results: This working group chose to start this pilot project in the vascular surgery ward, demonstrating the ability of the tool used to capture the different aspects it set out to collect. In detail, the new version of SWA proposed in this work has made it possible to identify risk situations and system vulnerabilities that have allowed the introduction of corrective tools; detect adherence to existing company procedures, reschedule training on these specific topics after reviewing, and possibly update the same procedures; record the patient experience about the doctor-patient relationship and communication to hypothesize thematic courses on the subject; evaluate workers' perception of their health conditions about work, and above all reassure operators that their well-being is in the interest of the management of the healthcare company, which is maintained. Conclusions: Therefore, the outcome of the present study demonstrates the versatility and ever-present usefulness of the SWA tool.

Engagement of medication users in the development and implementation of digital medication adherence technologies: a multi-stakeholder study.

BACKGROUND: This study aims to create a comprehensive framework for the development and implementation of digital medication adherence technologies (DMATech), focusing on critical stages where engagement of medication users (MU) is considered meaningful, i.e. adds significant value, as agreed upon by participating stakeholders. METHODS: Through a literature review and expert consensus, a framework was outlined covering key DMATech development and implementation phases and steps. An in-person workshop with MU representatives and adherence experts, using the Nominal Group Technique, further refined these stages for MU engagement. RESULTS: The DMATech framework included three phases: 'Innovation,' 'Research and Development,' and 'Launch and Implementation,' each encompassing multiple steps. The workshop, attended by five MU representatives and nine adherence experts, identified critical stages for MU input including context analysis, ideation, proof of concept, prototype creation, DMATech's iteration, critical evaluation, healthcare implementation, real-world assessment, and improvement. Nevertheless, there was a divergence of consensus regarding the importance of MUs engagement in regulatory, financial, and marketing aspects. CONCLUSIONS: This study provides a holistic framework for DMATech development and implementation and underscores the necessity of MU engagement at various stages. Modes of MU engagement cannot be generalized; a case-by-case evaluation of engagement strategies is essential.

Patient and family engagement in patient safety in the Eastern Mediterranean Region: a scoping review.

BACKGROUND: Patients can play a key role in delivering safe care by becoming actively involved in their health care. This study aimed at reviewing the literature for evidence of patients' and families' engagement in patient safety in the Eastern Mediterranean Region (EMR). METHODS: We conducted a scoping review of the literature published in English using PubMed, Medline, CINAHL, Scopus, ISI Web of Science, and PsycINFO until June 2023. RESULTS: A total of 9019 studies were screened, with 22 meeting the inclusion criteria. Our review found few published studies of patient and family engagement in patient safety research in the EMR. Thirteen studies explored the attitudes, perceptions, and/or experiences / preferences of patients, families, and healthcare providers (HCPs) regarding patient engagement in patient safety. Nine publications reported patient involvement in patient safety activities at varying levels. Three categories of factors were identified that may affect patient involvement: patient-related (e.g., lack of awareness on their role in preventing harms, unwillingness to challenge HCPs' authority, and cultural barriers); HCP-related (e.g., negative attitudes towards patient engagement, poor patient-provider communication, and high workload); and healthcare setting-related (e.g., lack of relevant policies and guidelines, lack of training for patients, and HCPs, and lack of patient-centered approach). CONCLUSION: This review highlighted limitations in the current literature on patient and family engagement in patient safety in the EMR, including both the depth of evidence and clarity of concepts. Further research is needed to explore how to actively involve patients and their families, as well as to determine whether such involvement translates into improved safety in practice.

What guidance exists to support patient partner compensation practices? A scoping review of available policies and guidelines.

BACKGROUND: An integral aspect of patient engagement in research, also known as patient and public involvement, is appropriately recognising patient partners for their contributions through compensation (e.g., coauthorship, honoraria). Despite known benefits to compensating patient partners, our previous work suggested compensation is rarely reported and researchers perceive a lack of guidance on this issue. To address this gap, we identified and summarised available guidance and policy documents for patient partner compensation. METHODS: We conducted this scoping review in accordance with methods suggested by the JBI. We searched the grey literature (Google, Google Scholar) in March 2022 and Overton (an international database of policy documents) in April 2022. We included articles, guidance or policy documents regarding the compensation of patient partners for their research contributions. Two reviewers independently extracted and synthesised document characteristics and recommendations. RESULTS: We identified 65 guidance or policy documents. Most documents were published in Canada (57%, n = 37) or the United Kingdom (26%, n = 17). The most common recommended methods of nonfinancial compensation were offering training opportunities to patient partners (40%, n = 26) and facilitating patient partner attendance at conferences (38%, n = 25). The majority of guidance documents (95%) suggested financially compensating (i.e., offering something of monetary value) patient partners for their research contributions. Across guidance documents, the recommended monetary value of financial compensation was relatively consistent and associated with the role played by patient partners and/or specific engagement activities. For instance, the median monetary value for obtaining patient partner feedback (i.e., consultation) was $19/h (USD) (range of $12-$50/h). We identified several documents that guide the compensation of specific populations, including youth and Indigenous peoples. CONCLUSION: Multiple publicly available resources exist to guide researchers, patient partners and institutions in developing tailored patient partner compensation strategies. Our findings challenge the perception that a lack of guidance hinders patient partner financial compensation. Future efforts should prioritise the effective implementation of these compensation strategies to ensure that patient partners are appropriately recognised. PATIENT OR PUBLIC CONTRIBUTIONS: The patient partner coauthor informed protocol development, identified data items, and interpreted findings.

Patient participation in surgical wound care in acute care settings: An integrative review.

BACKGROUND: Surgical site infections can significantly impact postoperative recovery. Patient participation, which involves patients actively engaging in wound care, has been linked to improved healing and reduced wound complications. However, there is limited synthesis of the literature that explores the patient's role and participation in the context of surgical wound care. OBJECTIVE: To explore patients' perceptions of how they participate in surgical wound care, within 30 days post-operation. DESIGN: An integrative review guided by Whittemore and Knafl's methodology. This review was registered with PROSPERO (CRD42022363669). DATA SOURCES: Searches were conducted in Medline (Ovid), CINAHL (Complete), and EMBASE (Elsevier) databases in October 2023, supplemented by forward and backward citation searching. REVIEW METHODS: Based on a priori eligibility criteria, two authors independently screened articles to select relevant studies. The quality of the included research articles was critically appraised using the Mixed Methods Appraisal Tool. A descriptive and thematic synthesis was used to synthesise the findings. RESULTS: Of the 4701 records screened for titles and abstracts, 25 studies using qualitative, quantitative, and mixed-methods designs were included. Three key themes were identified. In theme 1, 'I am healing: how my wound shapes me and my journey,' physical symptoms, psychological factors and previous experiences significantly influenced patients' engagement in wound care. Theme 2, 'Taking charge of my healing: my active engagement in wound care' described how patient participation in surgical wound care goes beyond clinical procedures and can include the use of technology and holistic self-care. Finally, theme 3, 'Navigating the path to recovery: How others shape my experience' showed that effective communication is crucial for promoting participation, yet issues like inadequate information can leave patients unprepared for wound management. CONCLUSIONS: This review highlights opportunities to personalise and prioritise a patient-oriented approach to surgical wound care. Clinicians and educators should adopt an individualised approach by tailoring patient participation based on patient factors (i.e. physical symptoms) and adopt patient-centred communication approaches. Researchers should focus on exploring approaches to self-care and technology, as these approaches may enhance patient participation in wound care.

Collaborating with cancer patients and informal caregivers in a European study on quality of life: protocol to embed patient and public involvement within the EUonQoL project.

BACKGROUND: Patient and public involvement (PPI) has become an essential part of health research. There is a need for genuine involvement in order to ensure that research is relevant to patients. This can then improve the quality, relevance, and impact of health research, while at the same time reducing wasted research and in doing so bringing science and society closer together. Despite the increasing attention for this involvement, it is not yet common practice to report on proposed activities. An article reporting planned PPI could provide guidance and inspiration for the wider academic community in future activities. Therefore, this current article aims to describe the way in which PPI principles are incorporated in the research project called "Quality of Life in Oncology: measuring what matters for cancer patients and survivors in Europe (EUonQoL)." This project aims to develop a new set of questionnaires to enable cancer patients to assess their quality of life, entitled the EUonQoL-Kit. METHODS: The first step is to recruit cancer patients and their informal caregivers as co-researchers in order to train them to collaborate with the researchers. Based on their skills and preferences, they are then assigned to several of the project's work packages. Their individual roles, tasks, and responsibilities regarding the work packages, to which they have been assigned, are evaluated and adapted when necessary. The impact of their involvement is evaluated by both the researchers and co-researchers. DISCUSSION: PPI is a complex and dynamic process. As such, the overall structure of the research may be defined while at the same time leaving room for certain aspects to be filled in later. Our research is, we believe, relevant as co-researcher involvement in such a large European project as EUonQoL is a new development.

A Scoping Review of Patient and Public Involvement (PPI) in Empirical Stroke Research.

BACKGROUND: Impactful, evidence-based solutions in surveillance, prevention, acute care, and rehabilitation for stroke survivors are required to address the high global burden of stroke. Patient and Public Involvement (PPI), where patients, their families, and the public are actively involved as research partners, enhances the relevance, credibility, and impact of stroke-related research. AIMS: This scoping review, adhering to the PRISMA Scoping Review guidelines, aims to identify and summarize how PPI is currently implemented and reported in empirical stroke research using a participatory approach. SUMMARY OF REVIEW: A comprehensive search strategy was developed and implemented across Medline, CINAHL, EMBASE, PsynchINFO and Cochrane electronic databases, supplemented by grey literature searches. Empirical stroke research papers in the English language, published from 2014 up to 2023 and documenting PPI activity were included. Of the 18,143 original papers identified, 2,824 full text manuscripts matching from this time window were screened. Only 2% (n=72) of these directly reported embedded PPI activity in empirical research. The majority were qualitative in design (60%) and were conducted in high-income countries (96%). Only one included study originated from a developing country, where the burden of stroke is highest. Most studies (94%) provided some information about the activities carried out with their PPI partners, mainly centered on the study design (57%) and management (64%), with only 4% of studies integrating PPI across all research cycle phases from funding application through to dissemination. When studies were examined for compliance with the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) short form checklist, only 11% of included studies were 100% compliant. Twenty-one studies (29%) reported barriers and facilitators to including PPI in stroke research. Organization, authentic partnership and experienced PPI representatives were common facilitators and identified barriers reflected concerns around adequate funding, time required and diversity in perspectives. A positive reporting bias for PPI impact was observed, summarized as keeping the patient perspective central to the research process, improved care of study participants, validation of study findings, and improved communication / lay-summaries of complex research concepts. CONCLUSIONS: PPI is underutilised and inconsistently reported in current empirical stroke research. PPI must become more widely adopted, and notably in low- and middle-income countries. Consensus-driven standards for inclusion of PPI by funding organisations and publishers is required to support its widespread adoption.

Practical Strategies for Co-design: The Case of Engaging Patients in Developing Patient-Facing Shared-Decision Making Materials for Lung Cancer Screening.

Co-design provides a meaningful way to engage patients in research. However, there is limited practical guidance. We used our co-design project to identify strategies for other researchers. An ethnographic case study design was used. Data included participant observation of co-design meetings, meeting minutes, analytic fieldnotes, qualitative patient interviews, and research team member self-reflections. Additionally, we got external feedback. We analyzed data iteratively. Our team included 5 patients and 6 researchers. We identified 3 strategies to include patients in co-design: (1) Deliberately build the team, from recruiting patients to specifying roles. (2) Tailor the meeting format to thoughtfully use patients' time and expertise. (3) Disrupt traditional hierarchies, to empower patients to actively participate. Researchers seeking to include patients as team members should consider: team composition and roles, leveraging meeting formats to optimize contributions and purposefully creating a culture of collaboration, so patient expertise informs the end product. Our work provides practical guidance for researchers to incorporate patient expertise in the co-design process and meaningfully involve them in their work.

An environmental scan of tools that help individuals living with mild cognitive impairment or neurocognitive disorders (NCD) achieve their preferred health or well-being.

BACKGROUND AND OBJECTIVES: Older adults experiencing neurocognitive disease (NCD) contend with complex care often characterized by high emotional strain. Mitigating complex care with decision support tools can clarify options. When used in conjunction with the practice of Shared Decision Making (SDM) these tools can improve satisfaction and confidence in treatment. Use of these tools for cognitive health has increased but more is needed to understand how these tools incorporate social needs into treatment plans. RESEARCH DESIGN AND METHODS: We conducted an environmental scan using a MEDLINE informed search strategy and feedback from an expert steering committee to characterize current tools and approaches for engaging older adults experiencing NCD. We assessed their application and development, incorporation of social determinants, goals or preferences, and inclusion of caregivers in their design. RESULTS: We identified eleven articles, seven of which show that SDM helps guide tool development and that all tools center on clinical decision making. Types of tools varied by clinical site and those differences reflected patient need. A collective value across tools was their use to forge meaningful conversations. No tool appeared designed with the explicit goal to elicit patient social needs or incorporate non-clinical strategies into treatment plans. DISCUSSION AND IMPLICATIONS: Several challenges and opportunities that centered on strategies to engage patients in the design and testing of tools that support conversations with clinicians about cognitive health. Future work should focus on building and testing adaptable tools that support patient and family social care needs beyond clinical care settings.

Patient perspectives on liver transplant evaluation: A qualitative study.

OBJECTIVE: Liver transplant (LT) evaluation is a complex process for patients involving multi-step and parallel medical, surgical, and psychosocial assessments of a patient's appropriateness for transplant. Patients may experience difficulties in navigating the evaluation process, potentially leading to disengagement and resulting in further health decline or death prior to completing evaluation. We aimed to identify and characterize patients' perceptions of undergoing LT evaluation. METHODS: We performed fourteen 30-45 min, semi-structured interviews between 3/2021-5/2021 with patients at a large LT center. Using the constant comparison method, we individually noted themes within and across interviews and codes. RESULTS: Our analysis generated 5 thematic dimensions related to patient engagement (i.e., patient involvement/activation): (1) psychological impact of evaluation on patients' lives; (2) information received during evaluation; (3) prior medical experience of the patient; 4) communication between patients and transplant providers; and (5) support system of the patients. Among these dimensions, we identified 8 themes. CONCLUSION: LT patient engagement is a multi-dimensional component of LT evaluation that incorporates the psychological impact, information received, prior medical experience, communication, and support systems of patients. PRACTICAL IMPLICATIONS: This work can inform targeted interventions for increasing patient engagement during the LT evaluation process.