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1.
Health Res Policy Syst ; 22(1): 74, 2024 Jul 02.
Article de Anglais | MEDLINE | ID: mdl-38956568

RÉSUMÉ

BACKGROUND: The European Regulation on Health Technology Assessment (EU HTA R), effective since January 2022, aims to harmonize and improve the efficiency of common HTA across Member States (MS), with a phased implementation from January 2025. At "midterms" of the preparation phase for the implementation of the Regulation our aim was to identify and prioritize tangible action points to move forward. METHODS: During the 2023 Spring Convention of the European Access Academy (EAA), participants from different nationalities and stakeholder backgrounds discussed readiness and remaining challenges for the Regulation's implementation and identified and prioritized action points. For this purpose, participants were assigned to four working groups: (i) Health Policy Challenges, (ii) Stakeholder Readiness, (iii) Approach to Uncertainty and (iv) Challenges regarding Methodology. Top four action points for each working group were identified and subsequently ranked by all participants during the final plenary session. RESULTS: Overall "readiness" for the Regulation was perceived as neutral. Prioritized action points included the following: Health Policy, i.e. assess adjustability of MS laws and health policy processes; Stakeholders, i.e. capacity building; Uncertainty, i.e. implement HTA guidelines as living documents; Methodology, i.e. clarify the Population, Intervention, Comparator(s), Outcomes (PICO) identification process. CONCLUSIONS: At "midterms" of the preparation phase, the focus for the months to come is on executing the tangible action points identified at EAA's Spring Convention. All action points centre around three overarching themes: harmonization and standardization, capacity building and collaboration, uncertainty management and robust data. These themes will ultimately determine the success of the EU HTA R in the long run.


Sujet(s)
Renforcement des capacités , Union européenne , Politique de santé , Participation des parties prenantes , Évaluation de la technologie biomédicale , Humains , Incertitude , Europe , Académies et instituts , Réglementation gouvernementale
3.
BMC Palliat Care ; 23(1): 163, 2024 Jul 01.
Article de Anglais | MEDLINE | ID: mdl-38951852

RÉSUMÉ

BACKGROUND: National palliative care plans depend upon stakeholder engagement to succeed. Assessing the capability, interest, and knowledge of stakeholders is a crucial step in the implementation of public health initiatives, as recommended by the World Health Organisation. However, utilising stakeholder analysis is a strategy underused in public palliative care. OBJECTIVE: To conduct a stakeholder analysis characterising a diverse group of stakeholders involved in implementing a national palliative care plan in three rural regions of an upper-middle-income country. METHODS: A descriptive cross-sectional study design, complemented by a quantitative stakeholder analysis approach, was executed through a survey designed to gauge stakeholders' levels of interest and capability in relation to five fundamental dimensions of public palliative care: provision of services, accessibility of essential medicines, palliative care education, financial support, and palliative care vitality. Stakeholders were categorised as promoters (high-power, high-interest), latent (high-power, low-interest), advocates (low-power, high-interest), and indifferent (low-power and low-interest). Stakeholder self-perceived category and knowledge level were also assessed. RESULTS: Among the 65 surveyed stakeholders, 19 were categorised as promoters, 34 as advocates, 9 as latent, and 3 as indifferent. Stakeholders' self-perception of their category did not align with the results of the quantitative analysis. When evaluated by region and palliative care dimensions the distribution of stakeholders was nonuniform. Palliative care funding was the dimension with the highest number of stakeholders categorised as indifferent, and the lowest percentage of promoters. Stakeholders categorised as promoters consistently reported a low level of knowledge, regardless of the dimension, region, or their level of interest. CONCLUSIONS: Assessing the capability, interest, and knowledge of stakeholders is a crucial step when implementing public health initiatives in palliative care. It allows for a data-driven decision-making process on how to delegate responsibilities, administer financial resources, and establish governance boards that remain engaged and work efficiently.


Sujet(s)
Soins palliatifs , Participation des parties prenantes , Humains , Soins palliatifs/méthodes , Soins palliatifs/normes , Études transversales , Enquêtes et questionnaires , Mâle , Femelle , Adulte , Adulte d'âge moyen
4.
BMC Complement Med Ther ; 24(1): 253, 2024 Jul 03.
Article de Anglais | MEDLINE | ID: mdl-38961415

RÉSUMÉ

BACKGROUND: The utilization of complementary and alternative medicine (CAM) is experiencing a global surge, accompanied by the adoption of national CAM policies in numerous countries. Traditional Persian medicine (TPM) is highly used as CAM in Iran, and the ongoing scientific evaluation of its interventions and the implementation of evidence-based medicine (EBM) encounters various barriers. Therefore, comprehending the characteristics and interactions of stakeholders is pivotal in advancing EBM within TPM policies. In this study, we utilized both classical stakeholder analysis and social network analysis to identify key stakeholders and potential communication patterns, thereby promoting EBM in TPM policy-making. METHODS: A cross-sectional nationwide stakeholder analysis was conducted in 2023 using snowball sampling. The interviews were carried out using a customized version of the six building blocks of health. Data were collected through semi-structured interviews. Stakeholders were assessed based on five factors (power, interest, influence, position, and competency). The connections and structure of the network were analyzed using degree, betweenness, closeness centrality, and modularity index to detect clusters of smaller networks. RESULTS: Among twenty-three identified stakeholders, the Ministry of Health and Medical Education (MOHME) and the Public were the most powerful and influential. The Iranian Academy of Medical Sciences was the most competent stakeholder. Social network analysis revealed a low density of connections among stakeholders. Pharmaceutical companies were identified as key connectors in the network, while the Public, supreme governmental bodies, and guilds acted as gatekeepers or brokers. The MOHME and Maraji were found to be high-ranking stakeholders based on four different centrality measures. CONCLUSION: This study identifies powerful stakeholders in the network and emphasizes the need to engage uninterested yet significant stakeholders. Recommendations include improving competence through education, strengthening international relations, and fostering stronger relationships. Engaging key connectors and gatekeepers is essential for bridging gaps in the network.


Sujet(s)
Médecine traditionnelle , Analyse des réseaux sociaux , Humains , Études transversales , Iran , Participation des parties prenantes , Mâle , Femelle , Pratique factuelle , Adulte , Médecine factuelle , Adulte d'âge moyen
5.
Disabil Rehabil ; : 1-10, 2024 Jul 08.
Article de Anglais | MEDLINE | ID: mdl-38975689

RÉSUMÉ

PURPOSE: Wearable robotic devices are currently being developed to improve upper limb function for individuals with hemiparesis after stroke. Incorporating the views of clinicians during the development of new technologies can help ensure that end products meet clinical needs and can be adopted for patient care. METHODS: In this cross-sectional mixed-methods study, an anonymous online survey was used to gather clinicians' perceptions of a wearable robotic hand orthosis for post-stroke hemiparesis. Participants were asked about their clinical experience and provided feedback on the prototype device after viewing a video. RESULTS: 154 participants completed the survey. Only 18.8% had previous experience with robotic technology. The majority of participants (64.9%) reported that they would use the device for both rehabilitative and assistive purposes. Participants perceived that the device could be used in supervised clinical settings with all phases of stroke. Participants also indicated a need for insurance coverage and quick setup time. CONCLUSIONS: Engaging clinicians early in the design process can help guide the development of wearable robotic devices. Both rehabilitative and assistive functions are valued by clinicians and should be considered during device development. Future research is needed to understand a broader set of stakeholders' perspectives on utility and design.


Clinicians valued both assistive and rehabilitative uses of a wearable robotic hand orthosis designed for individuals with hemiparesis after stroke.Wearable robotic hand devices should have the capacity to engage in functional, real-world activities for both assistive and rehabilitative purposes.Pragmatic factors, such as set-up and training time, must be balanced with device complexity to enable implementation in clinical settings.Stakeholders, such as clinicians, play an important role in identifying design priorities for wearable robotic devices to ensure these devices can meet the needs of end-users.

6.
Health Expect ; 27(4): e14136, 2024 Aug.
Article de Anglais | MEDLINE | ID: mdl-38990165

RÉSUMÉ

OBJECTIVES: The purpose of this study was to engage key stakeholders in a health research priority-setting process to identify, prioritize and produce a community-driven list of research questions addressing intersectional issues on mental health and addictions (MHA) in acquired brain injury (ABI). METHODS: A multiphasic health research priority-setting process was co-designed and executed with community-based stakeholders, including researchers, health professionals, clinicians, service providers, representatives from brain injury associations, policy makers and people with lived experience of ABI and MHA, including patients and their family members. Stakeholders' ideas led to the generation of research questions, which were prioritized at a 1-day workshop. RESULTS: Fifty-nine stakeholders participated in the priority-setting activity during the workshop, which resulted in a rank-ordered list of the top 10 questions for research addressing the intersections of ABI and MHA. Questions identified touched on several pressing issues (e.g., opioid crisis, homelessness), encompassed multiple subtypes of ABI (e.g., hypoxic-ischaemic, mild traumatic), and involved different domains (e.g., identification, intervention) of health research. CONCLUSIONS: This community-driven health research priority-setting study identified and prioritized research questions addressing the intersections of ABI and MHA. Researchers and funding agencies should use this list to inform their agendas and address stakeholders' most urgent needs, fostering meaningful improvements to clinical services. PATIENT OR PUBLIC CONTRIBUTION: An 11-person working group comprised of people with lived experience, service providers, researchers, healthcare professionals and other key stakeholders collaboratively developed and informed the scope, design, methodology and interpretation of this study. Over 50 community-based stakeholders contributed to the research priority-setting activity. One co-author is a person with lived experience.


Sujet(s)
Lésions encéphaliques , Participation des parties prenantes , Humains , Lésions encéphaliques/thérapie , Troubles liés à une substance/thérapie , Santé mentale , Priorités en santé
7.
Health Res Policy Syst ; 22(1): 76, 2024 Jul 04.
Article de Anglais | MEDLINE | ID: mdl-38965544

RÉSUMÉ

Healthcare professionals have first-hand experience with patients in clinical practice and the dynamics in the healthcare system, which can be of great value in the design, implementation, data analysis and dissemination of research study results. Primary care professionals are particularly important as they provide first contact, accessible, coordinated, comprehensive and continuous people-focused care. However, in-depth examination of the engagement of health professionals in health system research and planning activities-how professionals are engaged and how this varies across national contexts- is limited, particularly in international initiatives. There is a need to identify gaps in the planning of engagement activities to inform the design and successful implementation of future international efforts to improve the responsiveness of health systems to the changing needs of patients and professionals. The aim of this study was to explore how primary care professionals were engaged in the design and implementation plans of an international health policy study led by the Organisation for Economic Co-operation and Development (OECD). The OECD's international PaRIS survey measures and disseminates information on patient-reported outcome and experience measures (PROMs and PREMs) of people living with chronic conditions who are managed in primary care. A documentary analysis of 17 written national implementation plans (country roadmaps) was conducted between January and June 2023. Two reviewers independently performed the screening and data abstraction and resolved disagreements by discussion. We reported the intended target primary care professionals, phase of the study, channel of engagement, level of engagement, and purpose of engagement. All 17 countries aimed to engage primary care professionals in the execution plans for the international PaRIS survey. While organisations of primary care professionals, particularly of family doctors, were the most commonly targeted group, variation was found in the timing of engagement activities during the different phases of the study and in the level of engagement, ranging from co-development (half of the countries co-developed the survey together with primary care professionals) to one-off consultations with whom. International guidance facilitated the participation of primary care professionals. Continuous collaborative efforts at the international and national levels can foster a culture of engagement with primary care organisations and individual professionals and enhance meaningful engagement of primary care professionals.


Sujet(s)
Personnel de santé , Politique de santé , Organisation de coopération et de développement économiques , Soins de santé primaires , Humains , Soins de santé primaires/organisation et administration , Enquêtes et questionnaires , Prestations des soins de santé , Maladie chronique/thérapie
8.
Implement Sci Commun ; 5(1): 72, 2024 Jul 04.
Article de Anglais | MEDLINE | ID: mdl-38965581

RÉSUMÉ

BACKGROUND: Although eMental health interventions are a viable solution to address disparities in access to mental healthcare and increase its efficiency, they still face challenges of implementation. Literature highlights numerous barriers such as diffusion of responsibility and unclear expectations of what implementation entails might hinder this process. While research mostly focuses on analyzing these barriers, there is an urgent need to increase uptake in practice. In turn, commercial companies focus mostly on increasing uptake, while overlooking research outputs. To bridge the gap between research and practice, attention to how implementation occurs in practice is required. This study investigates "Make it Happen" (MiH), the implementation model developed by the eMental Health company Minddistrict, aiming to gain more insight into operationalizing implementation frameworks by 1) describing MiH and its conceptual underpinnings, and 2) gaining lessons learned from the development of MiH. Ultimately, this work aims at improving existing scientific frameworks by extending them with knowledge from practice. METHODS: First, individual interviews and focus groups with Minddistrict implementation managers were performed. Second, individual interviews with project leads in mental healthcare organizations that were involved in the implementation of Minddistrict were conducted. Within Minddistrict, 7 implementation managers and account managers were involved, in addition to 11 project leads from mental healthcare organizations. Data were elaborated with thematic analysis. RESULTS: A comprehensive description of MiH and its 5 main phases was achieved. During the 1) Onboarding phase, implementing organizations are guided by Minddistrict to build a team responsible for implementation, which then 2) designs patient and client journeys, 3) builds, tailors and configures their offer, 4) trains key-users and, 5) evaluates the success of implementation. All participants had extensive and aligned definitions and articulated expectations on implementation. Points of improvement for the model such as role ambiguity and excessive workload were identified. As strengths, internal motivation and good relationships with the provider were valued. CONCLUSION: The present study highlights the importance of clear role division and stakeholder engagement in implementation processes, and suggest that a strong collaboration between companies and academia could optimize implementation efforts and ensure a better fit between humans, context, and technologies.

9.
J Int AIDS Soc ; 27 Suppl 1: e26278, 2024 Jul.
Article de Anglais | MEDLINE | ID: mdl-38965981

RÉSUMÉ

INTRODUCTION: Successful implementation of evidence-based practices depends on contextual factors like stakeholder engagement, the socio-political environment, resource availability, and stakeholders' felt needs and preferences. Nevertheless, inequities in implementation exist and undermine efforts to address HIV in marginalized key populations. Implementation science shows promise in addressing such inequities in the HIV response, but can be limited without meaningful engagement from citizens or communities. DISCUSSION: We define the concept of a citizen-engaged HIV implementation science as one that involves citizens and communities deeply in HIV implementation science activities. In this commentary, we discuss how citizen science approaches can be leveraged to spur equity in HIV implementation science. Drawing on three areas previously defined by Geng and colleagues that serve to drive impactful implementation science in the HIV response, we discuss how citizens can be engaged when considering "whose perspectives?", "what questions are being asked?" and "how are questions asked?". With respect to "whose perspectives?" a citizen-engaged HIV implementation science would leverage participatory methods and tools, such as co-creation, co-production and crowdsourcing approaches, to engage the public in identifying challenges, solve health problems and implement solutions. In terms of "what questions are being asked?", we discuss how efforts are being made to synthesize citizen or community-led approaches with existing implementation science frameworks and approaches. This also means that we ensure communities have a say in interrogating and deconstructing such frameworks and adapting them to local contexts through participatory approaches. Finally, when considering "how are questions asked?", we argue for the development and adoption of broad, guiding principles and frameworks that account for dynamic contexts to promote citizen-engaged research in HIV implementation science. This also means avoiding narrow definitions that limit the creativity, innovation and ground-up wisdom of local citizens. CONCLUSIONS: By involving communities and citizens in the development and growth of HIV implementation science, we can ensure that our implementation approaches remain equitable and committed to bridging divides and ending AIDS as a public health threat. Ultimately, efforts should be made to foster a citizen- and community-engaged HIV implementation science to spur equity in our global HIV response.


Sujet(s)
Infections à VIH , Science de la mise en oeuvre , Humains , Infections à VIH/prévention et contrôle , Science citoyenne/méthodes , Participation communautaire/méthodes
10.
J Environ Manage ; 365: 121583, 2024 Jun 29.
Article de Anglais | MEDLINE | ID: mdl-38944955

RÉSUMÉ

Environmental Social and Governance (ESG) has emerged as a sensitive issue, attracting the attention of a large audience that could not be ignored. Government bodies continue to pass regulations mandating organizations to comply with ESG principles. However, many organizations have had unsatisfactory results while promoting sustainability ideals due to various challenges. To achieve ESG goals, the present study offers a thorough framework for ESG implementation across organizations based on the critical success factor (CSF) theory and the opinions of diverse stakeholders. Following a literature review and brainstorming with ESG experts and academicians, a survey questionnaire was sent to 400 respondents to evaluate the 20 factors identified as 'super-set' CSFs for ESG implementation. This paper represents a novel attempt in ESG research as it conducts a survey supported by exploratory factor analysis (EFA). The interactions between the significant CSFs were studied by employing total interpretative structural modeling (TISM) and fuzzy MICMAC approach. ESG implementation is found to be highly driven by firm characteristics, earnings quality, and environmental performance, which can be argued to be the fundamental determinants of ESG implementation. According to these findings, organizations' leadership should (1) focus on effectively structuring firms' attributes to swiftly operate the ESG implementation framework, (2) ensure consistent business earnings that signal improved future performance, and (3) continuously monitor and assess their environmental performance. These efforts should be supported by engaging with diverse stakeholder groups, each playing its respective role in ESG implementation. Consequently, ESG implementation across organizations is anticipated to accelerate with thoughtful organizational coordination, strategic planning, and compliance with authoritative policies. However, rather than solely focusing on creating ESG disclosure laws, policymakers should also focus on creating better ESG outcomes through effective ESG implementation. Therefore, this research offers valuable insights into improving ESG practices, which facilitates the adoption of mandatory ESG disclosure regulations.

11.
Article de Anglais | MEDLINE | ID: mdl-38934097

RÉSUMÉ

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.

12.
Am J Transplant ; 2024 May 31.
Article de Anglais | MEDLINE | ID: mdl-38825154

RÉSUMÉ

Normothermic regional perfusion (NRP) is a promising technology to improve organ transplantation outcomes by reversing ischemic injury caused by controlled donation after circulatory determination of death. However, it has not yet been implemented in Canada due to ethical questions. These issues must be resolved to preserve public trust in organ donation and transplantation. This qualitative, constructivist grounded theory study sought to understand how those most impacted by NRP perceived the ethical implications. We interviewed 29 participants across stakeholder groups of donor families, organ recipients, donation and transplantation system leaders, and care providers. The interview protocol included a short presentation about the purpose of NRP and procedures in abdomen versus chest and abdomen NRP, followed by questions probing potential violations of the dead donor rule and concerns regarding brain reperfusion. The results present a grounded theory placing NRP within a trust-building continuum of care for the donor, their family, and organ recipients. Stakeholders consistently described both forms of NRP as an ethical intervention, but their rationales were predicated on assumptions that neurologic criteria for death had been met following circulatory death determination. Empirical validation of these assumptions will help ground the implementation of NRP in a trust-preserving way.

13.
Clin Pediatr (Phila) ; : 99228241260167, 2024 Jun 10.
Article de Anglais | MEDLINE | ID: mdl-38853718

RÉSUMÉ

Parents of infants requiring neonatal intensive care unit (NICU) hospitalization often experience increased rates of distress, trauma, and perinatal mood disorders. Untreated parental mental health conditions have short- and long-term effects for infants and families. While some NICUs provide varying degrees of mental health supports for NICU families, these services are not universally or systematically integrated in US NICUs. Multiple factors contribute to this gap in care, including mental health stigma, funding constraints, and lack of staff training and capacity. In an effort to address this gap, we used a participatory action research approach, guided by a Patient and Stakeholder Engagement model, to partner with graduate NICU parents and patient-facing NICU staff to identify parental mental health needs and ideas to address them. Through efforts to mitigate power differentials and engage parents as research and program development partners, our work shaped NICU practices, programming, and subsequent research.

14.
Front Psychiatry ; 15: 1385947, 2024.
Article de Anglais | MEDLINE | ID: mdl-38919639

RÉSUMÉ

Augmentative alternative communication (AAC) devices or systems are often prescribed to minimally verbal or nonspeaking autistic individuals and other individuals with complex communication needs to facilitate communication or as an alternative to spoken language. AAC use can result in communication gains and improved quality of life for minimally verbal or nonspeaking individuals. Despite this, AAC abandonment is high, limiting societal participation of the individual on the autism spectrum with complex communication needs. Our study is a novel exploration of the barriers of AAC use from a multi-stakeholder perspective, and a qualitative analysis of similarities and differences between stakeholders. We conducted semi-structured interviews and focus groups with 30 parent-carers, educators and clinicians currently supporting AAC users in Western Australia and analysed the data using reflexive thematic analysis. Barriers from each stakeholder group were coded, resulting in 17 subthemes forming five main themes common to all stakeholders: Stakeholder Knowledge, Stakeholder Attitudes and Stigma, Resources, AAC User Engagement, and Device Fit. Contrasting perspectives included actual and perceived stigma associated with AAC use (parent-carers vs clinicians); different struggles with resources and knowledge (parent-carers vs clinicians and educators); and a lack of clinician communication in the processes that determined AAC-fit for school environments (educators only). Findings are discussed in the context of improving inter-stakeholder collaboration and capacity building in Australian health service and practice to better support minimally verbal or nonspeaking autistic individuals and individuals with complex communication needs. Suggestions are also offered for communication partner training.

15.
Health Expect ; 27(3): e14094, 2024 Jun.
Article de Anglais | MEDLINE | ID: mdl-38881096

RÉSUMÉ

INTRODUCTION: Patient and public involvement is vital for high-quality research. Integrating patients' and providers' perspectives early in research enhances the feasibility and relevance of study results. Within our family practice-based research network ForN, we established a standing patient advisory board (PAB) to include patients with diverse conditions and experiences. In this paper, we aim to describe the establishment and functioning of a standing PAB in family medicine research from patients' and researchers' perspectives. METHODS: After each PAB meeting, patients and researchers were asked to name anonymously positive and challenging moments in a feedback form with open questions. Researchers were also asked to reflect on how they implemented the discussion content in their research projects. The responses from both groups were transferred to MAXQDA 2018 and analyzed separately using thematic analysis. RESULTS: We analyzed 40 feedback forms from patients and 14 feedback forms from researchers. The dominant theme in the patients' feedback was 'exchange': They positively emphasized the 'exciting and open discussions' and the exchange of perspectives with one another and researchers. The clarity of the researchers' presentations and the research topics were appreciated. Researchers also positively highlighted the open atmosphere of the discussions. Presenting their research to the PAB helped most researchers reflect on their research topics from patients' perspectives and implement changes. However, researchers also mentioned several barriers to the implementation of PAB members' feedback. CONCLUSION: The establishment of a standing PAB in family practice research is feasible and productive both from patients' and researchers' perspectives. PATIENT OR PUBLIC CONTRIBUTION: This study reports the evaluation of the establishment of a standing PAB in family practice research. Board members are involved in the design of studies, the co-production of interventions and information material, and the interpretation of data.


Sujet(s)
Comités consultatifs , Médecine de famille , Recherche qualitative , Personnel de recherche , Humains , Mâle , Femelle , Participation des patients , Adulte d'âge moyen , Adulte
16.
Front Med (Lausanne) ; 11: 1399947, 2024.
Article de Anglais | MEDLINE | ID: mdl-38898937

RÉSUMÉ

The article shows that the input given by healthcare professionals (HCPs) adds value to the regulatory processes surrounding the development, authorisation, and monitoring of a medicine, but is also an instrument for accountability, trust, mutual exchange as well as an insight into the public health issues that matter most to one of the key stakeholder groups the Agency works with. We highlight the role of HCPs in the EU regulatory process and take stock of the first 10 years of the Framework for Interaction with HCPs to describe how practises have evolved over this time to meet the goals of informing, consulting and improving trust in the EU regulatory system. We will analyse what led European Medicines Agency (EMA) to develop this framework through to the next steps and where the interaction might lead in the future.

17.
J Clin Med ; 13(11)2024 May 25.
Article de Anglais | MEDLINE | ID: mdl-38892817

RÉSUMÉ

Background: Chronic bothersome tinnitus is a prevalent tinnitus subtype placing a high burden on affected individuals, economies, and healthcare systems. Patient and professional perspectives seem to be partly misaligned on how to improve tinnitus research and treatments in the future. This qualitative interview study was aimed at exploring, comparing, and stipulating the perspectives of different tinnitus stakeholder groups on ways of redirecting research and treatments to reduce patients' suffering while accounting for challenges within these practices. Methods: This study used the participatory action research approach to facilitate the stakeholder involvement. Semi-structured online interviews including five participants (two tinnitus patients, two tinnitus researchers and medical specialists, one general practitioner) were conducted. Inductive grounded theory and the constant comparative method were used for data analysis. Results: Four categories for suggested research adaptations ((I) ethical patient involvement; (II) prioritising cure versus coping research; (III) funding; (IV) ethical publication) and six categories for suggested treatment adaptations ((I) ethical professional support; (II) patient involvement; (III) interdisciplinarity; (IV) professional tinnitus education; (V) clinical treatment guidelines; (VI) psychological treatment) were identified. Participants held partly similar priorities such as increasing pathophysiological and cure research. Differences between participants included, for instance, patients aiming for increasing patient involvement in tinnitus research and treatments compared to professionals arguing that the excessive focus on patients' conditions might reduce the patients' chances of habituating to their symptoms. Conclusions: Four action redirections for improving tinnitus research and treatment practices were defined: (I) facilitating communication between and within stakeholder groups, (II) increasing the reflective use of patient involvement, (III) increasing interdisciplinarity, and (IV) reducing barriers to receiving psychological treatment.

18.
Front Public Health ; 12: 1357908, 2024.
Article de Anglais | MEDLINE | ID: mdl-38883190

RÉSUMÉ

Epidemiological models-which help us understand and forecast the spread of infectious disease-can be valuable tools for public health. However, barriers exist that can make it difficult to employ epidemiological models routinely within the repertoire of public health planning. These barriers include technical challenges associated with constructing the models, challenges in obtaining appropriate data for model parameterization, and problems with clear communication of modeling outputs and uncertainty. To learn about the unique barriers and opportunities within the state of Arizona, we gathered a diverse set of 48 public health stakeholders for a day-and-a-half forum. Our research group was motivated specifically by our work building software for public health-relevant modeling and by our earnest desire to collaborate closely with stakeholders to ensure that our software tools are practical and useful in the face of evolving public health needs. Here we outline the planning and structure of the forum, and we highlight as a case study some of the lessons learned from breakout discussions. While unique barriers exist for implementing modeling for public health, there is also keen interest in doing so across diverse sectors of State and Local government, although issues of equal and fair access to modeling knowledge and technologies remain key issues for future development. We found this forum to be useful for building relationships and informing our software development, and we plan to continue such meetings annually to create a continual feedback loop between academic molders and public health practitioners.


Sujet(s)
Santé publique , Arizona/épidémiologie , Humains , Logiciel , Participation des parties prenantes , Modèles théoriques
19.
Glob Health Res Policy ; 9(1): 18, 2024 May 31.
Article de Anglais | MEDLINE | ID: mdl-38822437

RÉSUMÉ

BACKGROUND: The COVID-19 pandemic demonstrated the vital need for research to inform policy decision-making and save lives. The Wales COVID-19 Evidence Centre (WCEC) was established in March 2021 and funded for two years, to make evidence about the impact of the pandemic and ongoing research priorities for Wales available and actionable to policy decision-makers, service leads and the public. OBJECTIVES: We describe the approaches we developed and our experiences, challenges and future vision. PROGRAM IMPLEMENTATION: The centre operated with a core team, including a public partnership group, and six experienced research groups as collaborating partners. Our rapid evidence delivery process had five stages: 1. Stakeholder engagement (continued throughout all stages); 2. Research question prioritisation; 3. Bespoke rapid evidence review methodology in a phased approach; 4. Rapid primary research; and 5. Knowledge Mobilisation to ensure the evidence was available for decision-makers. MAIN ACHIEVEMENTS: Between March 2021-23 we engaged with 44 stakeholder groups, completed 35 Rapid Evidence Reviews, six Rapid Evidence Maps and 10 Rapid Evidence Summaries. We completed four primary research studies, with three published in peer reviewed journals, and seven ongoing. Our evidence informed policy decision-making and was cited in 19 Welsh Government papers. These included pandemic infection control measures, the Action Plan to tackle gender inequalities, and Education Renew and Reform policy. We conducted 24 Welsh Government evidence briefings and three public facing symposia. POLICY IMPLICATIONS: Strong engagement with stakeholder groups, a phased rapid evidence review approach, and primary research to address key gaps in current knowledge enabled high-quality efficient, evidence outputs to be delivered to help inform Welsh policy decision-making during the pandemic. We learn from these processes to continue to deliver evidence from March 2023 as the Health and Care Research Wales Evidence Centre, with a broader remit of health and social care, to help inform policy and practice decisions during the recovery phase and beyond.


Sujet(s)
COVID-19 , Politique de santé , Processus politique , COVID-19/épidémiologie , COVID-19/prévention et contrôle , Humains , Pays de Galles , Pandémies/prévention et contrôle , Prise de décision , Pratique factuelle , Médecine factuelle
20.
Nonprofit Volunt Sect Q ; 53(4): 866-897, 2024 Aug.
Article de Anglais | MEDLINE | ID: mdl-38903695

RÉSUMÉ

Collaborative engagement between international and local nongovernmental organizations (NGOs) has recently been promoted as an effective strategy to enhance internal process strengths but less as a strategy to localize humanitarian aid programs; a grand strategy that aims to strengthen local capacity, develop local capabilities, and boost regional humanitarian project performance. While stakeholders deem to play an important role in leveraging the efficiencies of such collaborative engagements between international and local actors, there is limited empirical knowledge about how stakeholder pressure affects the association between the collaboration-performance association within international and local NGOs. Drawing on stakeholder theory, we propose a model to examine the role of donors, media, and governments, three major stakeholders noteworthy because of their power and legitimacy to moderate the collaboration-performance association in this NGO context. We test our hypotheses across a series of samples collected at both international and local NGOs in 2015 and 2020. From a practical perspective, we discuss how the traditional role of NGOs as implementers of aid programs is shifting toward a new role as conveners and capability builders.

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