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1.
Health Expect ; 27(5): e70021, 2024 10.
Article in English | MEDLINE | ID: mdl-39264797

ABSTRACT

INTRODUCTION: Calls for a 'major rethinking' of the delivery of healthcare services are echoed across Canada as the healthcare crisis continues. Proposed strategies to address the challenges of this crisis include: a transdisciplinary approach that is patient-focused and community-based; a representative team composed of patients, caregivers, healthcare providers, decision makers and policymakers; and authentic collaboration among stakeholder groups throughout the research cycle. OBJECTIVE: This study aimed to enable community members to take on a leading role in building capacity and to provide a space for discourse among diverse groups while respecting community wisdom, values and priorities. METHODS: The Collaborative Health Research Institute of Southern Alberta (CHRISA) organized a participant-oriented Unconference event to address the factors contributing to the healthcare crisis in Alberta, Canada. An Unconference is a participant-oriented meeting where the attendees nominate the topics, agree on the agenda and lead the sessions. This article describes the Unconference programme and presents the findings from a thematic analysis of the discussion notes from breakout sessions, feedback from participants (i.e., lessons learned) and pragmatic recommendations for future Unconference events. RESULTS: Findings from sessions included the following: (1) identifying the 'wicked' problems, (2) the factors/causes contributing to each problem (i.e., contributors) and (3) potential multifaceted solutions or ideas to remedy the problem. Lessons learned from the postevent evaluation resulted in six recommendations for organizing future Unconferences. CONCLUSION: The CHRISA Unconference achieved its goals by providing a venue for attendees to connect, engage and network on topics of interest, explore new ways of addressing challenges in healthcare and serve as a foundation for future initiatives and collaborations in healthcare research and practice. PATIENT OR PUBLIC CONTRIBUTION: The Unconference was attended by community members who identify as patients, frontline workers, programme administrators and representatives of public organizations and agencies. Participants contributed to breakout session discussions, provided feedback on the Unconference and offered recommendations for future events. The co-authors are service users, people with lived experience or those work in the healthcare setting; they have been involved in data collection, analysis and interpretation, and contributed to this report.


Subject(s)
Cooperative Behavior , Delivery of Health Care , Humans , Alberta , Health Personnel/psychology , Community Participation/methods , Stakeholder Participation
2.
BMC Health Serv Res ; 24(1): 1052, 2024 Sep 11.
Article in English | MEDLINE | ID: mdl-39261814

ABSTRACT

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).


Subject(s)
Delphi Technique , Motivation , Patient Participation , Patient Safety , Humans , Patient Participation/psychology , Surveys and Questionnaires , Female , Male , Adult , Health Personnel/psychology , Middle Aged , Interviews as Topic , Stakeholder Participation , Qualitative Research
3.
Implement Sci ; 19(1): 63, 2024 Sep 11.
Article in English | MEDLINE | ID: mdl-39261956

ABSTRACT

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).


Subject(s)
Research Design , Humans , Stakeholder Participation , Health Services Research/organization & administration , Systematic Reviews as Topic , Health Personnel
4.
BMC Public Health ; 24(1): 2445, 2024 Sep 09.
Article in English | MEDLINE | ID: mdl-39251939

ABSTRACT

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.


Subject(s)
COVID-19 , Infection Control , Refugees , Humans , COVID-19/prevention & control , COVID-19/epidemiology , Refugees/psychology , Refugees/statistics & numerical data , Germany , Male , Female , Adult , Police/psychology , SARS-CoV-2 , Qualitative Research , Middle Aged , Stakeholder Participation/psychology , Pandemics/prevention & control
5.
Health Res Policy Syst ; 22(1): 125, 2024 Sep 09.
Article in English | MEDLINE | ID: mdl-39252001

ABSTRACT

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.


Subject(s)
Emergency Medical Services , India , Humans , Emergency Medical Services/organization & administration , Health Facilities/standards , Emergencies , Delivery of Health Care, Integrated/organization & administration , Research Design , Delivery of Health Care , Time Factors , Health Services Research , Implementation Science , Stakeholder Participation
6.
Trials ; 25(1): 610, 2024 Sep 12.
Article in English | MEDLINE | ID: mdl-39267164

ABSTRACT

BACKGROUND: Recruitment for neonatal clinical trials can be particularly challenging. Low enrollment rates bias the research population and decrease generalizability of findings. We identified a critical need for an intervention to improve how researchers recruit for neonatal clinical trials. Working within the US neonatal research context, we developed the Better Research Interactions for Every Family (BRIEF) Intervention, which had two overarching goals: to improve the recruitment experience for all parents, focusing on minoritized populations, and to increase participation, focusing on decreasing disparities in research participation. METHODS: We used intervention mapping (IM) to guide all steps of intervention development. IM is a planning framework that provides a systematic process and detailed protocol for step-by-step decision-making for intervention development, implementation, and evaluation. RESULTS: We performed IM's six steps. In step 1, we convened two stakeholder groups, a parent panel and an expert panel, who provided guidance through development of all BRIEF components. Through a recent systematic review, empirical data collected by our team, and consultations with the panels, we identified key determinants (barriers and facilitators) of low enrollment rates and research team members as change agents. In step 2, we iteratively refined our list of key factors to include and linked determinants of behavior changes to these performance objectives. In step 3, we chose three theories (social cognitive theory, theory of information processing, and the trans-theoretical model), methods from identified practical applications suitable for the population (research team members) and the context (busy research NICU teams). In step 4, we developed and refined the intervention components, including self-guided pre-work and a single in-person session. In step 5, we identified the Darbepoetin plus slow-release intravenous iron trial as our partner study in which to pilot BRIEF. In step 6, we developed a multi-stage evaluation plan that included five distinct levels of outcomes. CONCLUSIONS: This manuscript shares our rationale and processes for the creation of a research team member-facing intervention aiming to improve recruitment processes for neonatal clinical trials. Our approach can inform those aiming to improve recruitment for neonatal clinical trials and those who may be considering use of IM within similar contexts.


Subject(s)
Clinical Trials as Topic , Patient Selection , Humans , Infant, Newborn , Clinical Trials as Topic/methods , Stakeholder Participation , Parents/psychology , Research Personnel , Research Design
7.
BMJ Open Respir Res ; 11(1)2024 Sep 03.
Article in English | MEDLINE | ID: mdl-39231598

ABSTRACT

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.


Subject(s)
Disease Progression , Humans , United Kingdom , Surveys and Questionnaires , Stakeholder Participation , Idiopathic Pulmonary Fibrosis/therapy , Idiopathic Pulmonary Fibrosis/diagnosis , Biomedical Research , Male , Female , Pulmonary Fibrosis/therapy , Health Priorities , Research
8.
Health Res Policy Syst ; 22(1): 122, 2024 Sep 04.
Article in English | MEDLINE | ID: mdl-39232736

ABSTRACT

BACKGROUND: Much remains unknown about how complex community-based programmes can successfully achieve long-term impact. More insight is needed to understand the key mechanisms through which these programmes work. Therefore, we conducted an in-depth study in five communities that implemented the Healthy Youth, Healthy Future (JOGG) approach, a Dutch community-based obesity prevention programme. We aimed to identify perceived outcomes and long-term impacts among local stakeholders and explore potential causal pathways and working mechanisms. METHODS: We used ripple effects mapping (REM), a qualitative participatory method to map outcomes and identify causal pathways, in five communities. We involved 26 stakeholders, professionals and policy-makers affiliated with the local JOGG approach, spread over eight REM sessions and conducted individual interviews with 24 additional stakeholders. To uncover working mechanisms, we compared outcomes and causal pathways across communities. RESULTS: Over 5-9 years of implementation, participants perceived that JOGG had improved ownership of local stakeholders, health policies, intersectoral collaboration and social norms towards promoting healthy lifestyles. Causal pathways comprised small initial outcomes that created the preconditions to enable the achievement of long-term impact. Although exact JOGG actions varied widely between communities, we identified five common working mechanisms through which the JOGG approach contributed to causal pathways: (1) creating a positive connotation with JOGG, (2) mobilizing stakeholders to participate in the JOGG approach, (3) facilitating projects to promote knowledge and awareness among stakeholders while creating successful experiences with promoting healthy lifestyles, (4) connecting stakeholders, thereby stimulating intersectoral collaboration and (5) sharing stakeholder successes that promote healthy lifestyles, which gradually created a social norm of participation. CONCLUSIONS: The JOGG approach seems to work through activating initial stakeholder participation and bolstering the process towards ownership, policy change, and intersectoral collaboration to promote healthy lifestyles. Key working mechanisms can inform further development of JOGG as well as other complex community-based prevention programmes.


Subject(s)
Health Policy , Health Promotion , Program Evaluation , Stakeholder Participation , Humans , Netherlands , Health Promotion/methods , Obesity/prevention & control , Healthy Lifestyle , Qualitative Research , Community Health Services , Social Norms , Administrative Personnel , Intersectoral Collaboration , Residence Characteristics , Female , Male
9.
Sci Rep ; 14(1): 20735, 2024 09 05.
Article in English | MEDLINE | ID: mdl-39237550

ABSTRACT

Safety culture is a critical determinant of organisational performance, particularly in high-risk industries especially in oil and gas. Understanding stakeholder preferences is essential for developing effective strategies that enhance safety culture. This study utilised the Analytic Hierarchy Process (AHP) to prioritise stakeholder preferences, identifying key elements of safety culture in Malaysia's oil and gas sector. This study employed a structured methodology to evaluate safety culture within the oil and gas industry, focusing on 18 sub-elements across three key domains: psychological, behavioural, and situational factors. A diverse sample of industry experts was recruited using purposeful and snowball sampling to ensure a comprehensive representation of stakeholder views. The AHP framework was applied to analyse the data, utilizing structured questionnaires and multicriteria decision-making techniques to prioritize the identified safety culture elements. The AHP analysis identified distinct priorities among different professional groups within the oil and gas sector. Safety and Health Practitioners emphasized practical elements such as safety rules and management commitment, while academicians prioritized knowledge and training. Management personnel highlighted the importance of safety ownership and communication, whereas policymakers focused on broader, policy-oriented aspects. The findings suggest that safety culture improvement initiatives should be tailored to address the specific needs and priorities of each professional group. A nuanced understanding of stakeholder preferences is crucial for developing comprehensive strategies that integrate observable behaviours, situational conditions, and psychological factors, ultimately fostering a robust safety culture in the oil and gas industry.


Subject(s)
Oil and Gas Industry , Humans , Malaysia , Surveys and Questionnaires , Organizational Culture , Stakeholder Participation , Safety Management , Male , Female , Adult , Decision Making
10.
BMC Cancer ; 24(1): 1109, 2024 Sep 05.
Article in English | MEDLINE | ID: mdl-39237888

ABSTRACT

Meaningful engagement with stakeholders in research demands intentional approaches. This paper describes the development of a framework to guide stakeholder engagement as research partners in a pragmatic trial proposed to evaluate behavioral interventions for dysphagia in head and neck cancer patients. We highlight the core principles of stakeholder engagement including representation of all perspectives, meaningful participation, respectful partnership with stakeholders, and accountability to stakeholders; and describe how these principles were operationalized to engage relevant stakeholders throughout the course of a large clinical trial.


Subject(s)
Head and Neck Neoplasms , Stakeholder Participation , Humans , Head and Neck Neoplasms/therapy , Deglutition Disorders/therapy , Deglutition Disorders/etiology , Research Design , Pragmatic Clinical Trials as Topic/methods , Patient Participation
11.
Int J Public Health ; 69: 1606642, 2024.
Article in English | MEDLINE | ID: mdl-39234445

ABSTRACT

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.


Subject(s)
Public Health , Stakeholder Participation , Female , Humans , Male , Delphi Technique , Surveys and Questionnaires , Switzerland , Systematic Reviews as Topic
12.
Neurosurg Clin N Am ; 35(4): 411-420, 2024 Oct.
Article in English | MEDLINE | ID: mdl-39244313

ABSTRACT

The G4 Alliance and its member organizations formed a delegation that participated in the 76th World Health Assembly (WHA) in 2023, which unanimously adopted the resolution to address micronutrient deficiencies through safe, effective food fortification to prevent congenital disorders such as spina bifida and anencephaly, the first neurosurgery-led resolution since the founding of the World Health Organization. The WHA included other resolutions and side events by the G4 Alliance and other organizations relevant to neurosurgery. An opportunity exists for neurosurgeons to harness the momentum from this resolution to promote initiatives to prevent neurosurgical disease or expand access to neurosurgical care.


Subject(s)
Food, Fortified , Global Health , Leadership , Neural Tube Defects , Humans , Neural Tube Defects/prevention & control , Neural Tube Defects/surgery , Neurosurgery , Neurosurgeons , Stakeholder Participation , World Health Organization
13.
BMC Public Health ; 24(1): 2393, 2024 Sep 03.
Article in English | MEDLINE | ID: mdl-39227851

ABSTRACT

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.


Subject(s)
Practice Guidelines as Topic , Humans , Germany , Neoplasms/therapy , Information Dissemination/methods , Medical Oncology/standards , Stakeholder Participation
14.
JMIR Hum Factors ; 11: e51525, 2024 Sep 09.
Article in English | MEDLINE | ID: mdl-39250216

ABSTRACT

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.


Subject(s)
Decision Making , Humans , Stakeholder Participation , Male , Adult , Female , Data Visualization , Opioid-Related Disorders/prevention & control , Qualitative Research
15.
Med Care ; 62(10): 693-700, 2024 Oct 01.
Article in English | MEDLINE | ID: mdl-39245817

ABSTRACT

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.


Subject(s)
Advance Care Planning , Palliative Care , Patient Outcome Assessment , Stakeholder Participation , Humans , Palliative Care/organization & administration , Advance Care Planning/organization & administration , Patient-Centered Care/organization & administration
16.
17.
Syst Rev ; 13(1): 212, 2024 Aug 06.
Article in English | MEDLINE | ID: mdl-39107829

ABSTRACT

BACKGROUND: Involving the public in evidence synthesis research is challenging due to the highly analytic nature of the projects, so it is important that involvement processes are documented, reflected upon, and shared to devise best practices. There is a literature gap on the involvement of the public in individual participant data meta-analyses, particularly in public health projects. We aimed to document and reflect on our collective experiences of involving and being involved as public stakeholders at all stages of a systematic review and individual participant data meta-analysis project. METHODS: We formed a stakeholder group made of four members of the public at the beginning of our evidence synthesis project comprising a systematic review, an aggregate data meta-analysis, and an individual participant data meta-analysis of mindfulness-based programmes for mental health promotion in non-clinical adults. Following each group meeting, members and participating researchers completed written reflections; one group member collected and collated these. At the end of the project, a reflective writing workshop was held before all members completed their final reflections. Everyone completed an adapted, open-ended questionnaire which asked about what did and did not work well, the overall experience, what could be improved, and the felt impact the stakeholder group had on the research. RESULTS: Overall, the stakeholders and researchers reported a positive experience of working together. Positives from the stakeholders' point of view included learning new skills, experiencing research, and making new friends. For the researchers, stakeholders helped them focus on what matters to the public and were reinvigorating research partners. The challenges stakeholders experienced included having long gaps between meetings and feeling overwhelmed. The researchers found it challenging to strike the balance between asking stakeholders to be involved and for them to learn research-related skills without overburdening them and making sure that the learning was engaging. When looking back at their experience, stakeholders described seeing their impact on the project in hindsight but that this was not felt while the project was being carried out. CONCLUSION: Successfully involving the public in complex evidence synthesis projects is possible and valuable from the points of view of the researchers and the stakeholders. However, it requires a significant time, skill, and resource investment that needs to be factored in from project inception. Further guidance and stakeholder training materials would be helpful. Specific suggestions are provided.


Subject(s)
Health Promotion , Mental Health , Mindfulness , Humans , Mindfulness/methods , Health Promotion/methods , Community Participation , Stakeholder Participation , Meta-Analysis as Topic
18.
Front Public Health ; 12: 1417684, 2024.
Article in English | MEDLINE | ID: mdl-39104886

ABSTRACT

In the past decade, significant European calls for research proposals have supported translational collaborative research on non-communicable and infectious diseases within the biomedical life sciences by bringing together interdisciplinary and multinational consortia. This research has advanced our understanding of disease pathophysiology, marking considerable scientific progress. Yet, it is crucial to retrospectively evaluate these efforts' societal impact. Research proposals should be thoughtfully designed to ensure that the research findings can be effectively translated into actionable policies. In addition, the choice of scientific methods plays a pivotal role in shaping the societal impact of research discoveries. Understanding the factors responsible for current unmet public health issues and medical needs is crucial for crafting innovative strategies for research policy interventions. A multistakeholder survey and a roundtable helped identify potential needs for consideration in the EU research and policy agenda. Based on survey findings, mental health disorders, metabolic syndrome, cancer, antimicrobial resistance, environmental pollution, and cardiovascular diseases were considered the public health challenges deserving prioritisation. In addition, early diagnosis, primary prevention, the impact of environmental pollution on disease onset and personalised medicine approaches were the most selected unmet medical needs. Survey findings enabled the formulation of some research-policies interventions (RPIs), which were further discussed during a multistakeholder online roundtable. The discussion underscored recent EU-level activities aligned with the survey-derived RPIs and facilitated an exchange of perspectives on public health and biomedical research topics ripe for interdisciplinary collaboration and warranting attention within the EU's research and policy agenda. Actionable recommendations aimed at facilitating the translation of knowledge into transformative, science-based policies are also provided.


Subject(s)
European Union , Public Health , Humans , Surveys and Questionnaires , Health Policy , Stakeholder Participation , Health Services Needs and Demand
19.
Int J Health Policy Manag ; 13: 8033, 2024.
Article in English | MEDLINE | ID: mdl-39099525

ABSTRACT

BACKGROUND: Interventions are needed to prevent and mitigate unhealthy commodity industry (UCI) influence on public health policy. Whilst literature on interventions is emerging, current conceptualisations remain incomplete as they lack considerations of the wider systemic complexities surrounding UCI influence, which may limit intervention effectiveness. This study applies systems thinking as a theoretical lens to help identify and explore how possible interventions relate to one another in the systems in which they are embedded. Related challenges to addressing UCI influence on policy, and actions to support interventions, were also explored. METHODS: Online participatory workshops were conducted with stakeholders with expertise in UCIs. A systems map, depicting five pathways to UCI influence, and the Action Scales Model were used to help participants identify interventions and guide discussions. Codebook thematic analysis was used to analyse the data. RESULTS: Fifty-two stakeholders participated in 23 workshops. Participants identified 27 diverse, interconnected and interdependent interventions corresponding to the systems map's pathways that reduce the ability of UCIs to influence policy. These include, for example, reform policy financing; regulate public-private partnerships (PPPs); reform science governance and funding; frame and reframe the narrative, challenge neoliberalism and gross domestic product (GDP) growth; leverage human rights; change practices on multistakeholder governance; and reform policy consultation and deliberation processes. Participants also identified four potential key challenges to interventions (ie, difficult to implement or achieve; partially formulated; exploited or misused; requires tailoring for context), and four key actions to help support intervention delivery (ie, coordinate and cooperate with stakeholders; invest in civil society; create a social movement; nurture leadership). CONCLUSION: A systems thinking lens revealed the theoretical interdependence between disparate and heterogenous interventions. This suggests that to be effective, interventions need to align, work collectively, and be applied synchronously to different parts of the system, including multiple levels of governance. Importantly, these interventions need to be supported by intermediary actions to be achieved. Urgent action is now required to strengthen healthy alliances and implement interventions.


Subject(s)
Health Policy , Systems Analysis , Humans , Public Health , Public-Private Sector Partnerships , Stakeholder Participation , Commerce
20.
Inquiry ; 61: 469580241273183, 2024.
Article in English | MEDLINE | ID: mdl-39183631

ABSTRACT

With a significant increase in the obesity epidemic in China, addressing adolescent obesity should be highlighted as a priority. The current qualitative study aims to explore the perspectives of key stakeholders regarding adolescent obesity, providing guidance for developing effective obesity interventions for Chinese adolescents. A total of 12 focus group discussions were convened with a range of representative stakeholders including adolescents (n = 37), parents (n = 28), and school staff (n = 21) from sample schools. Semi-structured topic guides were used for data collection. All data were transcribed verbatim and analyzed thematically. From multiple stakeholder perspectives, we finally identified 3 overarching themes (Understanding adolescent obesity, Key healthy lifestyles, and Barriers to obesity prevention practices) and 8 sub-themes. While participants had mixed perceptions of status and prevalence of adolescent obesity, all acknowledged the serious health consequences associated with it. As significant modifiable risk factors, unhealthy diet and physical activity were identified to be prevalent among Chinese teenagers and lead to excessive weight gain. However, a variety of individual, environmental and sociocultural factors hindered the implementation of healthy lifestyles, affecting adolescent obesity prevention and control. Given adolescent obesity is a complex, multifactorial and multilevel public issue, comprehensive lifestyle interventions are recommended that synergistically engage multiple stakeholders across key communities to fight the ongoing obesity epidemic.


Subject(s)
Focus Groups , Pediatric Obesity , Qualitative Research , Humans , Adolescent , Male , China/epidemiology , Female , Pediatric Obesity/prevention & control , Pediatric Obesity/epidemiology , Exercise , Parents/psychology , Risk Factors , Healthy Lifestyle , Stakeholder Participation , Diet
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