Patients' and stakeholders' experiences of a personalized self-management SUPport program (P-SUP) for patients with type 2 diabetes mellitus and/or coronary heart disease: a qualitative process evaluation : Maximilian Scholl.

BACKGROUND: Chronic diseases such as type 2 diabetes mellitus and coronary heart disease cause medical, social, and economic burdens worldwide. Disease management programs in Germany mostly lack components to improve patients' self-management and health-promoting lifestyles despite clear guideline recommendations. Therefore, a Personalized Self-Management Support Program (P-SUP) was developed, which includes: (1) peer support groups; (2) telephone coaching; (3) feedback reports and, (4) a web portal. This study aims to explore patients' and implementing stakeholders' experiences in the implementation of P-SUP to identify barriers and facilitators to the implementation of the intervention. METHODS: A qualitative study was conducted using face-to-face focus group interviews with participating patients and telephone-based one-to-one expert interviews with implementing stakeholders, involved in the delivery of the intervention. The transcribed interview reports were analyzed using qualitative content analysis, and the contents were categorized according to Donabedian's Structure-Process-Outcome framework. RESULTS: A total of six themes among patients (N = 35) and five themes among implementing stakeholders (N = 32) represent the experiences. The patient themes were: (1) technical conditions, (2) indoor facilities, (3) group composition, (4) acceptance of digital components, (5) supervision and feedback and (6) impact on lifestyle behavior. The themes among the implementing stakeholders were: (1) multiprofessional approach, (2) human resources, (3) patient acceptance, (4) supervision and feedback and (5) impact on lifestyle behavior. CONCLUSIONS: Multiprofessional interventions such as P-SUP appear to be valuable for patients and implementing stakeholders. Although infrastructural barriers made the implementation of peer support and digital patient education difficult, patients rated the exchange with peers and experts on health-related topics positively. The lack of supervision and feedback during the course of the intervention might be compensated by regular telephone coaching. The findings from this study can be used in future studies to guide researchers and implementing stakeholders and to improve the feasibility and effectiveness of complex interventions in different contexts. TRIAL REGISTRATION: The P-SUP study was registered in the German Clinical Trials Register (DRKS) on 16/07/2020 under the registration number DRKS00020592.

Key stakeholders' perspectives of illicit drug use and associated harms in the Northern Territory of Australia.

BACKGROUND: In the Northern Territory (NT) of Australia, there are significant evidence gaps about illicit drug use and harms, despite having established monitoring and reporting systems. This paper reports on illicit drug use, associated harms, contributing factors, service needs and priorities in the NT from the perspective and experiences of key stakeholders engaged in providing services for, or advocating on behalf of, people who use illicit drugs in the NT. METHODS: Face-to-face and online qualitative interviews were conducted with stakeholders across urban and remote locations in the NT. Key stakeholders were service providers, including acute and primary care clinicians, representatives of Aboriginal community controlled health organisations, lived experience advocates, peak body representatives and public health executives. Qualitative data were analysed thematically. RESULTS: Four researchers interviewed 21 participants across urban (62%), and remote areas (38%) of the NT. Themes identified were: (1) Illicit drug use and harms are diverse and distinct; (2) Client support needs are complex and influenced by co-morbidities, socio-demographic and cultural factors; (3) Priority population sub-groups need targeted strategies; (4) Local service strengths can be further developed and enhanced; (5) Local services need better resourcing; (6) Invest in progressive legislative and policy reforms; and (7) Improve routine monitoring and evaluation. CONCLUSIONS: Key stakeholders described illicit drug use, harms and contributing factors, which provided insights into the local challenges. Participants emphasised that clients have complex care needs, and further investment into targeted strategies are required to improve service engagement with priority groups. Service needs included greater understanding the role of dual diagnosis and its implementation and enhancing integrated and collaborative care in both primary health and acute care contexts. The voices of people with lived experience captured in this paper must inform local strategy and policy development relating to illicit drug use, in alignment with national strategy.

"The police came in white protective suits and with batons, it was pure disaster" - a multi-stakeholder perspective on infection control in reception centers for asylum seekers during the COVID-19 pandemic in Germany.

BACKGROUND: The COVID-19 pandemic presented unprecedented challenges, particularly for vulnerable populations residing in confined settings such as refugee shelters: Physical distancing measures were challenging to implement in shelters due to shared rooms or communal use of kitchens and sanitary facilities, which increased the risk of infections. Meanwhile, individuals' capabilities for individual protection strategies were severely impaired by the structure of the shelters. Consequently, shelters had the duty to develop and implement strategies for the prevention and handling of SARS-CoV-2 infections. The aim of this study was to explore the perspectives of refugees, NGO employees, and shelter directors regarding COVID-19-related measures in German refugee shelters. The study aimed to identify challenges and conflicts arising from implemented measures, as well as expectations for improved support during the pandemic. METHODS: Semi-structured and narrative interviews were conducted with 6 refugees, 6 facility managers, 12 NGO staff, and 2 social service agency staff from February to August 2022. Qualitative content analysis was employed to analyze the data, identifying overarching themes and codes. RESULTS: The study uncovered challenges and conflicts resulting from pandemic measures, particularly mass quarantine orders, within refugee shelters. Lack of transparency and ineffective communication worsened tensions, with refugees feeling distressed and anxious. The quarantine experience had a negative impact on refugees' mental health, which was exacerbated by limited social interaction and leisure-time activities. Shelter managers encountered administrative challenges when implementing measures due to facility constraints and limited resources, while NGO employees encountered obstacles in providing immediate assistance due to legal regulations and a lack of cooperation from shelter managers. CONCLUSIONS: The study highlights that shelters are problematic institutions from a public health perspective. It shows the importance of implementing customized pandemic interventions in refugee shelters that take account of the diverse needs and experiences of both refugee and staff. To achieve this, we recommend to establish an ethics committee and involve various stakeholders in decision-making processes. Additionally, enhancing information dissemination to promote transparency and public understanding of measures is crucial. These insights can help develop comprehensive and effective pandemic plans for refugee shelters, ensuring better preparedness for future public health crises.

Strengthening facility-based integrated emergency care services for time sensitive emergencies at all levels of healthcare in India: An implementation research study protocol.

BACKGROUND: The healthcare system in India is tiered and has primary, secondary and tertiary levels of facilities depending on the complexity and severity of health challenges at these facilities. Evidence suggests that emergency services in the country is fragmented. This study aims to identify the barriers and facilitators of emergency care delivery for patients with time-sensitive conditions, and develop and implement a contextually relevant model, and measure its impact using implementation research outcomes. METHODS: We will study 85 healthcare facilities across five zones of the country and focus on emergency care delivery for 11 time-sensitive conditions. This implementation research will include seven phases: the preparatory phase, formative assessment, co-design of Model "Zero", co-implementation, model optimization, end-line evaluation and consolidation phase. The "preparatory phase" will involve stakeholder meetings, approval from health authorities and the establishment of a research ecosystem. The "formative assessment" will include quantitative and qualitative evaluations of the existing healthcare facilities and personnel to identify gaps, barriers and facilitators of emergency care services for time-sensitive conditions. On the basis of the results of the formative assessment, context-specific implementation strategies will be developed through meetings with stakeholders, providers and experts. The "co-design of Model 'Zero'" phase will help develop the initial Model "Zero", which will be pilot tested on a small scale (co-implementation). In the "model optimization" phase, iterative feedback loops of meetings and testing various strategies will help develop and implement the final context-specific model. End-line evaluation will assess implementation research outcomes such as acceptability, adoption, fidelity and penetration. The consolidation phase will include planning for the sustenance of the interventions. DISCUSSION: In a country such as India, where resources are scarce, this study will identify the barriers and facilitators to delivering emergency care services for time-sensitive conditions across five varied zones of the country. Stakeholder and provider participation in developing consensus-based implementation strategies, along with iterative cycles of meetings and testing, will help adapt these strategies to local needs. This approach will ensure that the developed models are practical, feasible and tailored to the specific challenges and requirements of each region.

From the ground up: stakeholders' representations of the Irish longitudinal study on ageing (TILDA).

Healthy ageing, which is the target of life' s later developmental stage, can be achieved through building a wise perspective towards life and existence. However, it may not be achievable for older people when the societal sources are limited. The TILDA project aimed to evaluate the associated factors with healthy ageing and to transfer that knowledge into practice. Hence, determining the perspectives of older people support and advocacy organisations on the enablers and facilitators of the healthy ageing strategies of TILDA is essential to gain a better understanding of the project and plan future strategies. This study aimed to investigate how the TILDA project has influenced or impacted upon these organisations from education, policy, or practice perspectives. The participants (n = 15) included in the study's sample were reached through representative organisations acting to support older people in the Republic of Ireland. Semi-structured interviews were conducted online via Zoom. A systematic thematic data analysis procedure was followed, and three themes emerged from the qualitative data, revealing the perceptions of participants about the TILDA project: (1) Limitations of TILDA, (2) Contributions of TILDA, and (3) Future recommendations for TILDA. In conclusion, among the disadvantages of TILDA, the most significant is not being representative and visible enough; it is evident that it is pivotal to develop a more inclusive culture of TILDA with close cooperation and effective marketing strategies. It is also apparent that TILDA has several advantages that include providing insights into ageing and rich data to plan future support for older people.

Lessons Learned From Developing Dashboards to Support Decision-Making for Community Opioid Response by Community Stakeholders: Mixed Methods and Multisite Study.

BACKGROUND: Data dashboards are published tools that present visualizations; they are increasingly used to display data about behavioral health, social determinants of health, and chronic and infectious disease risks to inform or support public health endeavors. Dashboards can be an evidence-based approach used by communities to influence decision-making in health care for specific populations. Despite widespread use, evidence on how to best design and use dashboards in the public health realm is limited. There is also a notable dearth of studies that examine and document the complexity and heterogeneity of dashboards in community settings. OBJECTIVE: Community stakeholders engaged in the community response to the opioid overdose crisis could benefit from the use of data dashboards for decision-making. As part of the Communities That HEAL (CTH) intervention, community data dashboards were created for stakeholders to support decision-making. We assessed stakeholders' perceptions of the usability and use of the CTH dashboards for decision-making. METHODS: We conducted a mixed methods assessment between June and July 2021 on the use of CTH dashboards. We administered the System Usability Scale (SUS) and conducted semistructured group interviews with users in 33 communities across 4 states of the United States. The SUS comprises 10 five-point Likert-scale questions measuring usability, each scored from 0 to 4. The interview guides were informed by the technology adoption model (TAM) and focused on perceived usefulness, perceived ease of use, intention to use, and contextual factors. RESULTS: Overall, 62 users of the CTH dashboards completed the SUS and interviews. SUS scores (grand mean 73, SD 4.6) indicated that CTH dashboards were within the acceptable range for usability. From the qualitative interview data, we inductively created subthemes within the 4 dimensions of the TAM to contextualize stakeholders' perceptions of the dashboard's usefulness and ease of use, their intention to use, and contextual factors. These data also highlighted gaps in knowledge, design, and use, which could help focus efforts to improve the use and comprehension of dashboards by stakeholders. CONCLUSIONS: We present a set of prioritized gaps identified by our national group and list a set of lessons learned for improved data dashboard design and use for community stakeholders. Findings from our novel application of both the SUS and TAM provide insights and highlight important gaps and lessons learned to inform the design of data dashboards for use by decision-making community stakeholders. TRIAL REGISTRATION: ClinicalTrials.gov NCT04111939; https://clinicaltrials.gov/study/NCT04111939.

Which stakeholders should be addressed to promote Geriatric Medicine among healthcare professionals, educationalists and policy-makers in European countries? - the PROGRAMMING COST 21,122 action experience.

BACKGROUND: Geriatric Medicine (GM), concerned with well-being and health of older adults, can play a crucial role in the alignment of healthcare systems to the needs of the aged populations. However, countries have varying GM development backgrounds. The goal of PROGRAMMING- COST 21,122 Action is to propose the content of education and training activities in GM for healthcare professionals across various clinical settings, adapted to local context, needs, and assets. Defining relevant stakeholders and addressing them on both an international as well as a country-specific level is crucial for this purpose. In this paper we are describing the methods used in the PROGRAMMING Action 21,122 to map the different categories of stakeholders to be engaged in the Action. METHODS: Through conceptualizing a model for stakeholders by literature research, and online discussion group meetings, a synthesis for the potential stakeholders was defined as a template, and pilot applications were requested from participant countries. RESULTS: There were 24 members from 14 countries (6 males/18 females) of multidisciplinary professions involved in this study. A model for the list of stakeholders to be addressed was developed and, after seven online discussion meetings, a consensus framework was provided. Invited countries completed the templates to pilot such operationalization. CONCLUSION: Our framework of stakeholders will support the research coordination and capacity-building objectives of PROGRAMMING, including the participation into the assessment of educational needs of healthcare professionals. Identified stakeholders will also be mobilized for purposes of dissemination and maximization of the Action's impact. By defining and mapping multidisciplinary stakeholders involved in older people's care specific to countries, particularly where GM is still emerging, GM tailored educational activities will be facilitated and optimally targeted.

Strategies to foster stakeholder engagement in residency coaching: a CFIR-Informed qualitative study across diverse stakeholder groups.

INTRODUCTION: Coaching interventions in graduate medical education have proven successful in increasing technical and communication skills, reducing errors, and improving patient care. Effective stakeholder engagement enhances the relevance, value, and long-term sustainability of interventions, yet specific strategies for stakeholder engagement remain uncertain. The purpose of this article is to identify strategies to foster engagement of diverse stakeholder groups in coaching interventions. MATERIAL AND METHODS: We conducted 35 semi-structured interviews between November 2021 and April 2022 with purposively sampled key stakeholders that captured participants' perspectives on physicians' communication training needs, roles, and involvement in, as well as contextual factors, facilitators, barriers, and improvement strategies of the multi-departmental Communication Coaching Program at our institution. We utilized the Consolidated Framework of Implementation Research to guide data collection and analysis. An analytic approach relied on team-based thematic analysis with high inter-coder agreement between three raters (Cohen's kappa coefficient 0.83). Several validation techniques were used to enhance the credibility and trustworthiness of the study. RESULTS: Analysis of transcribed interviews with stakeholders directly involved in the Communication Coaching Program, including 10 residents, 10 faculty coaches, 9 medical education leaders, and 8 programmatic sponsors, revealed five key engagement strategies: (1) embrace collaborative design, (2) enable flexible adjustments and modifications, (3) secure funding, (4) identify champions, and (5) demonstrate outcomes. Additionally, a patient-centered approach to delivering the best possible patient care emerged as a primary objective that linked all stakeholder groups. DISCUSSION: Evaluating the experiences of key stakeholders in the Communication Coaching Program helped identify targetable strategies to facilitate participant engagement across all organizational levels. The analysis also revealed universal alignment around the importance of providing high-quality patient care. Insights from this work provide guidance for clinical training programs moving toward the implementation of coaching interventions.

Stakeholders' perspectives on capturing societal cost savings from a quality improvement initiative: A qualitative study.

BACKGROUND: Besides improving the quality of care, quality improvement initiatives often also intend to produce cost savings. An example is prehabilitation, which can reduce complication rates and the length of stay in the hospital. However, the process from utilization reductions to actual societal cost savings remains uncertain in practice. Our aim was to identify barriers and facilitators throughout this process. We used the implementation of prehabilitation in a Dutch hospital as a test case. METHODS: We held 20 semi-structured interviews between June and November 2023. Eighteen stakeholders were affiliated with the hospital and two with different health insurers. Nine interviews were held face-to-face and 11 via Microsoft Teams. The interviews were recorded and transcribed. The first transcripts were inductively coded by two authors, the subsequent transcripts by one and checked by another. Differences were resolved through discussion. RESULTS: We identified 20 barriers and 23 facilitators across four stages: reducing capacity, reducing departmental expenses, reducing hospital expenses and reducing insurer expenses. All participants expected that the excess capacity will be used for other priorities. This was perceived as highly valuable and as an efficiency gain. Other barriers to capture savings included the fear of losing resilience, flexibility, status and revenue. Misalignment between service contracts among hospitals and insurers can hinder the ability to financially incentivize cost reductions. Additionally, some contract types can hinder the transfer of hospital savings to insurers. Identified facilitators included shared savings agreements, an explicit strategy targeting all stages, and labor shortage, among others. CONCLUSION: This study systematically describes barriers and facilitators that prevent translating quality improvement initiatives into societal cost savings. Stakeholders expect that any saved capacity will be used for other priorities, including providing care due to the increasing demand. Capturing any cash savings does not occur automatically, emphasizing the need for a strategy targeting all stages.

Advancing Public Health Surveillance in Child Care Centers: Stakeholder-Informed Redesign and User Satisfaction Evaluation of the MCRISP Network.

Unlabelled: Leveraging user feedback, we redesigned a novel disease monitoring utility to allow for bidirectional data flow and in this letter offer insights into that process as well as lessons learned.

Critical factors challenging the integration of AI technologies in healthcare workplaces: a stakeholder assessment.

PURPOSE: This study aims to identify and assess the factors challenging the integration of artificial intelligence (AI) technologies in healthcare workplaces. DESIGN/METHODOLOGY/APPROACH: The study utilized a mixed approach, that starts with a literature review, then developing and testing a questionnaire survey of the factors challenging the integration of AI technologies in healthcare workplaces. In total, 46 factors were identified and classified under 6 groups. These factors were assessed by four different stakeholder categories: facilities managers, medical staff, operational staff and patients/visitors. The evaluations gathered were examined to determine the relative importance index (RII), importance rating (IR) and ranking of each factor. FINDINGS: All 46 factors were assessed as "Very Important" through the overall assessment by the four stakeholder categories. The results indicated that the most important factors, across all groups, are "AI ability to learn from patient data", "insufficient data privacy measures for patients", "availability of technical support and maintenance services", "physicians' acceptance of AI in healthcare", "reliability and uptime of AI systems" and "ability to reduce medical errors". PRACTICAL IMPLICATIONS: Determining the importance ratings of the factors can lead to better resource allocation and the development of strategies to facilitate the adoption and implementation of these technologies, thus promoting the development of innovative solutions to improve healthcare practices. ORIGINALITY/VALUE: This study contributes to the body of knowledge in the domain of technology adoption and implementation in the medical workplace, through improving stakeholders' comprehension of the factors challenging the integration of AI technologies.

COVID-19 research response to immediate demands: setting priorities with key stakeholders to enable health services research in NSW, Australia.

PURPOSE: COVID-19 has caused unprecedented disruption to health systems. There is much to be gained by capturing what was learned from changes and adaptations made by health services and systems. The Ministry of Health in New South Wales (NSW), Australia, sought to prioritise health services research (HSR) to address critical issues arising from the COVID-19 pandemic. We tested a priority setting methodology to create priorities for a specific funding opportunity and to extract generalisable lessons. DESIGN/METHODOLOGY/APPROACH: A virtual roundtable meeting of key stakeholders was held in June 2020. We used a modified Nominal Group Technique (NGT) for priority setting, with potential items (n = 35) grouped under headings. Data was analysed through a reflective deliberative process. FINDINGS: We engaged 89 senior policy makers, health service executives, clinicians and researchers in the roundtable. The NGT proved an efficient method with participants reaching consensus on eight priorities. Findings included strong support for learning from the rapid response to COVID-19 and addressing needs of vulnerable populations and the health workforce. Opinions differed about strategic areas investment and where learnings should be via internal evaluation rather than funded research. Three of the eight recommended priorities were included in the funding opportunity. RESEARCH LIMITATIONS/IMPLICATIONS: Coronavirus disease 2019 (COVID-19) required unprecedented change and adaptations within health systems, and rapid, applied health services research can help to create, understand and (where relevant) sustain change beyond the immediate impact of the pandemic. While final decisions may be dependent on a wider range of considerations by government, stakeholder enthusiasm for engagement in priority setting exercises may be dampened if they do not perceive their application in decision-making. PRACTICAL IMPLICATIONS: A modified nominal group technique can be used to set research priorities in constrained conditions by engaging large numbers of stakeholders in rankings and then using an online delivery of a roundtable and to reach consensus on priorities in real time. Recommended priorities for health services research can be readily generated through rapid engagement but does not guarantee their application. SOCIAL IMPLICATIONS: Australia's swift response to COVID-19 pandemic in 2020 was perceived as a relative success due to the rapid public health and policy response and a relatively low number of cases. This response was underpinned by systematic knowledge mobilisation including support for targeted and prioritised health services research to fill knowledge gaps. ORIGINALITY/VALUE: Setting priority processes can provide rich, engaged input to support government funding decisions about HSR. A wide range of dynamic and iterative processes influence decision-making in a rapidly evolving situation in the health system response to COVID-19. It is crucial to consider how major investment decisions will support a value-based healthcare system.

Stakeholders' Perspectives on Current Issues in Data Monitoring Committees.

Data Monitoring Committees (DMCs) are groups of experts that review accumulating data from one or more ongoing clinical studies and advise the Sponsor regarding the continuing safety of study subjects along with the continuing validity and scientific merit of the study. Although DMCs are widely used, considerable variability exists in their conduct. This paper offers recommendations, derived from sessions given at the 2023 Central European Network International Biometric and Statisticians in the Pharmaceutical Industry Conferences' and the authors' experiences. We focus on four topics that are part of the DMC process and where there is unclarity and inconsistency in current practices: (1) Communication with the DMC-We reflect on the importance of effective, proper communication channels between the DMC and relevant stakeholders to foster collaboration and exchange of critical information while retaining study integrity throughout. (2) Open sessions-We discuss the benefits of incorporating open sessions in DMC meetings to enhance transparency, inclusivity, and the consideration of diverse perspectives, as well as pitfalls of open sessions. (3) Access to efficacy data-We highlight the need for appropriate access to efficacy data by DMCs and discuss how to implement this in practice and how to address potential concerns regarding multiplicity. (4) Interactive data displays-We outline the utilization of interactive data displays to facilitate a more intuitive understanding of study results by the DMC. By addressing these topics, we aim to provide comprehensive practical recommendations that bridge the gap between current practices and optimal DMC functionality.

Practical Incorporation of Stakeholder-Informed Ethics into Research Funding Decisions.

Research funding has been criticized as biased against novel initiatives and lacking diversity, which leads to further disparities. Patient and stakeholder engagement could support research that goes beyond traditional paradigms and increases diversity. However, best practices to engage stakeholders in research, including funding decisions, continue to be developed. We report on the implementation of stakeholder input in two federally funded initiatives, one that seeks to advance research reducing disparities, and the other seeks to advance deprescribing research. Overall, the review process includes stakeholders as decision makers and supports their efforts through group discussion and other activities. Reconciling stakeholder input that may differ from scientific peer review is a challenge within the decision for funding. Lessons learned include balancing stakeholder and scientific assessments and including guidance on stakeholder engagement to grant awardees.

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).

Evaluation of research co-design in health: a systematic overview of reviews and development of a framework.

BACKGROUND: Co-design with consumers and healthcare professionals is widely used in applied health research. While this approach appears to be ethically the right thing to do, a rigorous evaluation of its process and impact is frequently missing. Evaluation of research co-design is important to identify areas of improvement in the methods and processes, as well as to determine whether research co-design leads to better outcomes. We aimed to build on current literature to develop a framework to assist researchers with the evaluation of co-design processes and impacts. METHODS: A multifaceted, iterative approach, including three steps, was undertaken to develop a Co-design Evaluation Framework: 1) A systematic overview of reviews; 2) Stakeholder panel meetings to discuss and debate findings from the overview of reviews and 3) Consensus meeting with stakeholder panel. The systematic overview of reviews included relevant papers published between 2000 and 2022. OVID (Medline, Embase, PsycINFO), EBSCOhost (Cinahl) and the Cochrane Database of Systematic reviews were searched for papers that reported co-design evaluation or outcomes in health research. Extracted data was inductively analysed and evaluation themes were identified. Review findings were presented to a stakeholder panel, including consumers, healthcare professionals and researchers, to interpret and critique. A consensus meeting, including a nominal group technique, was applied to agree upon the Co-design Evaluation Framework. RESULTS: A total of 51 reviews were included in the systematic overview of reviews. Fifteen evaluation themes were identified and grouped into the following seven clusters: People (within co-design group), group processes, research processes, co-design context, people (outside co-design group), system and sustainment. If evaluation methods were mentioned, they mainly included qualitative data, informal consumer feedback and researchers' reflections. The Co-Design Evaluation Framework used a tree metaphor to represent the processes and people in the co-design group (below-ground), underpinning system- and people-level outcomes beyond the co-design group (above-ground). To evaluate research co-design, researchers may wish to consider any or all components in the tree. CONCLUSIONS: The Co-Design Evaluation Framework has been collaboratively developed with various stakeholders to be used prospectively (planning for evaluation), concurrently (making adjustments during the co-design process) and retrospectively (reviewing past co-design efforts to inform future activities).

Implementing Patient-Centered Outcomes Research Institute Stakeholder Engagement Principles in Models of Palliative Care Delivery and Advance Care Planning Research.

BACKGROUND: Given the many challenges of conducting research that addresses the palliative and end-of-life care needs of patients with serious illnesses, stakeholder engagement starting from the moment of study conceptualization and design is critical to ensure successful participant recruitment, data collection, intervention delivery, data analysis, and dissemination. METHODS: Guided by a conceptual model published by the Patient-Centered Outcomes Research Institute (PCORI) entitled, "Measuring What Matters for Advancing the Science and Practice of Engagement"14 and with the support of a PCORI Engagement Officer, representatives from 9 PCORI-funded study teams formed a working group to survey team members and review, outline, and describe key lessons learned and best practices for promoting stakeholder engagement in palliative care research. RESULTS: Almost all study teams engaged with patients/caregivers, clinicians, researchers, and health care system experts as stakeholder partners. About half the teams also included payers and training institutions as part of their stakeholder advisors as well as a range of content experts. Study teams relied on a variety of support structures and resources, and they employed 10 distinct methods for maintaining engagement. All engagement methods were generally considered to be effective by teams who used the method, though there was some variability in team-rated engagement quality of each method. Nine barriers to stakeholder engagement were identified across the 9 studies as well as 9 strategies (or facilitators) to overcome these barriers. We share examples of how stakeholder engagement impacted studies in all phases, including the preparatory phase, study initiation phase, execution phase, and data analysis/dissemination phase. CONCLUSIONS: Teams utilized a variety of resources and support structures as well as capitalized on multiple engagement methods for fostering stakeholder engagement, resulting in a high level of collaboration and integration.

Recommendations to improve use and dissemination of patient versions of oncological clinical practice guidelines in Germany: results of a multi-stakeholder workshop.

BACKGROUND: Oncological patients have high information needs that are often unmet. Patient versions of oncological clinical practice guidelines (PVG) translate clinical practice guidelines into laypersons' language and might help to address patients' information needs. Currently, 30 oncological PVG have been published in Germany and more are being developed. Following a large multi-phase project on oncological PVGs in Germany, recommendations to improve use and dissemination of PVG were adopted in a multi-stakeholder workshop. METHODS: Organisations representing users of PVGs (patients, medical personnel, and multipliers), creators, initiators/funding organisations of PVGs, and organisations with methodological expertise in the development of clinical practice guidelines or in patient health information were invited to participate. The workshop included a World Café for discussion of pre-selected recommendations and structured consensus procedure for of all recommendations. Recommendations with agreement of > 75% were approved, and in case of ≤ 75% agreement, recommendations were rejected. RESULTS: The workshop took place on 24th April 2023 in Cologne, Germany. Overall, 23 people from 24 organisations participated in the discussion. Of 35 suggested recommendations 28 recommendations reached consensus and were approved. The recommendations referred to the topics dissemination (N = 13), design and format (N = 7), (digital) links (N = 5), digitalisation (N = 4), up-to-dateness (N = 3), and use of the PVG in collaboration between healthcare providers and patients (N = 3). CONCLUSION: The practical recommendations consider various perspectives and can help to improve use and dissemination of oncological PVG in Germany. The inclusion of different stakeholders could facilitate the transfer of the results into practice.

Research priorities for progressive pulmonary fibrosis in the UK.

INTRODUCTION: Health research bodies recommend patient involvement and engagement in research and healthcare planning, although their implementation is not yet widespread. This deficiency extends to progressive pulmonary fibrosis (PPF), where crucial aspects remain unknown, including causal mechanisms, curative treatments and optimal symptom management. This study addresses these gaps by seeking stakeholders' perspectives to guide research and treatment directions. METHOD: A priority-setting partnership was established to explore stakeholders' priorities in the diagnosis, treatment, management and care of PPF, including idiopathic pulmonary fibrosis which is the archetypal PPF. Stakeholders included people living with PPF, their carers, relatives and healthcare professionals involved in their management. RESULTS: Through an online open-ended survey, 2542 responses were collected from 638 stakeholders. Thematic analysis identified 48 specific research questions, which were then cross-referenced with academic literature to pinpoint research gaps. Following the evidence check, 44 unanswered questions were shortlisted by 834 stakeholders in a second online survey. Ultimately, a top 10 priority list was established through consensus.The prioritised research questions include (1) improved diagnosis accuracy and timing, (2) development of new treatments, (3) enhanced accuracy in primary care, (4) optimal timing for drug and non-drug interventions, (5) effective cough treatment, (6) early intervention for PPF, (7) improved survival rates, (8) symptom reduction, (9) impact of interventions on life expectancy and (10) new treatments with reduced side effects. CONCLUSION: Stakeholders' priorities can be summarised into five areas: early diagnosis, drug and non-drug treatments, survival and symptom management. Ideally, these topics should guide funding bodies and health policies.

A Structured Approach to Involve Stakeholders in Prioritising Topics for Systematic Reviews in Public Health.

Objectives: This study aimed to develop and apply a structured approach for prioritising topics for systematic reviews in public health, framed according to the readily applicable PICO format, which encourages the involvement of stakeholders' preferences in a transparent matter. Methods: We developed a multi-stage process, consisting of a scoping and two Delphi stages with web-based surveys and invited public health stakeholders in Switzerland to participate: First, respondents specified topics for different public health domains, which were reformulated in a PICO format by content analysis. Second, respondents rated the topics using five stakeholder-refined assessment criteria. Overall rankings were calculated to assess differences between stakeholder groups and rating criteria. Results: In total, 215 respondents suggested 728 topics altogether. The response rate in the two Delphi stages was 91.6% and 77.6%, respectively. Most top-rated review topics focused on the effectiveness of interventions providing education to different target groups, followed by interventions to increase access to specific healthcare services. Conclusion: Our approach encourages involvement of stakeholders in identifying priorities for systematic reviews and highlights disparities between stakeholders and between individual criteria.