Austria's Digital Vaccination Registry: Stakeholder Views and Implications for Governance.
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ABSTRACT:
SUBMITTER: Paul KT
PROVIDER: S-EPMC8706289 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundClinical quality registries (CQRs) can likely improve quality in healthcare and research. However, studies indicate that effective use of CQRs is hindered by lack of engagement and interest among stakeholders, as well as factors related to organisational context, registry design and data quality. To fulfil the potential of CQRs, more knowledge on stakeholders' perceptions of the factors that will facilitate or hamper the development of CQRs is essential to the more appropriate targeting of registry implementation and the subsequent use of the data. The primary aim of this study was to examine factors that can potentially affect the development of a national CQR for interventional radiology in Norway from the perspective of stakeholders. Furthermore, we wanted to identify the intervention functions likely to enable CQR development. Only one such registry, located in Sweden, has been established. To provide a broader context for the Norwegian study, we also sought to investigate experiences with the development of this registry.MethodsA qualitative study of ten Norwegian radiologists and radiographers using focus groups was conducted, and an in-depth interview with the initiator of the Swedish registry was carried out. Questions were based on the Capability, Opportunity and Motivation for Behaviour Model and the Theoretical Domains Framework. The participants' responses were categorised into predefined themes using a deductive process of thematic analysis.ResultsKnowledge of the rationale used in establishing a CQR, beliefs about the beneficial consequences of a registry for quality improvement and research and an opportunity to learn from a well-developed registry were perceived by the participants as factors facilitating CQR development. The study further identified a range of development barriers related to environmental and resource factors (e.g., a lack of organisational support, time) and individuallevel factors (e.g., role boundaries, resistance to change), as well as several intervention functions likely to be appropriate in targeting these barriers.ConclusionThis study provides a deeper understanding of factors that may be involved in the behaviour of stakeholders regarding the development of a CQR. The findings may assist in designing, implementing and evaluating a methodologically rigorous CQR intervention.
| S-EPMC8742914 | biostudies-literature
Project description:BACKGROUND:Increasing adoption of electronic health records in hospitals provides new opportunities for patient data to support public health advances. Such learning healthcare models have generated ethical debate in high-income countries, including on the role of patient and public consent and engagement. Increasing use of electronic health records in low-middle income countries offers important potential to fast-track healthcare improvements in these settings, where a disproportionate burden of global morbidity occurs. Core ethical issues have been raised around the role and form of information sharing processes for learning healthcare systems, including individual consent and individual and public general notification processes, but little research has focused on this perspective in low-middle income countries. METHODS:We conducted a qualitative study on the role of information sharing and governance processes for inpatient data re-use, using in-depth interviews with 34 health stakeholders at two public hospitals on the Kenyan coast, including health managers, providers and researchers. Data were collected between March and July 2016 and analysed using a framework approach, with Nvivo 10 software to support data management. RESULTS:Most forms of clinical data re-use were seen as an important public health good. Individual consent and general notification processes were often argued as important, but contingent on interrelated influences of the type of data, use and secondary user. Underlying concerns were linked to issues of patient privacy and autonomy; perceived risks to trust in health systems; and fairness in how data would be used, particularly for non-public sector re-users. Support for engagement often turned on the anticipated outcomes of information-sharing processes, as building or undermining trust in healthcare systems. CONCLUSIONS:As reported in high income countries, learning healthcare systems in low-middle counties may generate a core ethical tension between supporting a public good and respecting patient autonomy and privacy, with the maintenance of public trust acting as a core requirement. While more evidence is needed on patient and public perspectives on learning healthcare activities, greater collaboration between public health and research governance systems is likely to support the development of efficient and locally responsive learning healthcare activities in LMICs.
| S-EPMC6325859 | biostudies-other
Project description:Introduction:Integrated care is a goal of many health care systems. However, operationalizing and implementing integrated care remains challenging especially in continuously evolving policy environments. We report on a policy symposium held in 2017 focused on operationalizing a particular integrated care policy in the context of policy evolution in Ontario, Canada. Methodology:Forty-five participants attended the symposium including government employees, health care leaders, researchers, clinicians, and patient representatives. The symposium included presentations from representatives of each group and breakout sessions. Two trained observers recorded observational field notes. Results:We report four recommendations and fourteen sub-recommendations which arose regarding the implementation of the policy. We highlight four important tensions which characterize challenges regarding its implementation, and discuss the recommendations in the context of Collaborative Governance. Discussion:We outline how the recommendations could be strengthened by collaborative governance and identify where this framework could support governance and leadership challenges associated with implementing integrated care. We describe the unique challenges posed by working towards these goals in an evolving policy environment. Conclusion:We draw on collaborative governance to generate insights for leaders implementing integrated care and conclude by addressing the importance of maintaining collaborative governance initiatives under circumstances of unstable policy environments.
| S-EPMC7019202 | biostudies-literature
Project description:Numerous studies show the importance of social understanding in addressing multifaceted conservation issues. Building on a conservation planning framework, this study examines the social dimensions of wildlife conservation in Kinabatangan, Sabah, Malaysia. It employs a qualitative approach by conducting in-depth, semi-structured interviews with sixty informants drawn from local community members, government officials, tourism operators, non-government organizations, and the private sector. Our results show that the incidence of human-wildlife conflicts has reduced in the region, but that conflicts among stakeholders themselves about wildlife still remain a significant threat for attaining successful conservation outcomes. Further stakeholder perceptions of increased wildlife numbers often contrast with actual counts returned by periodical surveys conducted by conservation agencies, e.g., showing a 30% decline of orangutans and a 29% decline of gibbon abundance. This shows that evidence-based conservation messages have not been communicated well. The study has implications for enhancing social values among conservation players, promoting local community empowerment and revising conservation awareness programs.
| S-EPMC8996913 | biostudies-literature
Project description:In familial hypercholesterolemia (FH), carriers profit from presymptomatic diagnosis and early treatment. Due to the autosomal dominant pattern of inheritance, first degree relatives of patients are at 50% risk. A program to identify healthy relatives at risk of premature cardiovascular problems, funded by the Netherlands government until 2014, raised questions on privacy and autonomy in view of the chosen active approach of family members. Several countries are building cascade screening programs inspired by Dutch experience, but meanwhile, the Netherlands' screening program itself is in transition. Insight in stakeholders' views on approaching family members is lacking. Literature and policy documents were studied, and stakeholders were interviewed on pros and cons of actively approaching healthy relatives. Sociotechnical analysis explored new roles and responsibilities, with uptake, privacy, autonomy, psychological burden, resources, and awareness as relevant themes. Stakeholders agree on the importance of early diagnosis and informing the family. Dutch healthcare typically focuses on cure, rather than prevention. Barriers to cascade screening are paying an own financial contribution, limited resources for informing relatives, and privacy regulation. To benefit from predictive, personalized, and preventive medicine, the roles and responsibilities of stakeholders in genetic testing as a preventive strategy, and informing family members, need to be carefully realigned.
| S-EPMC6163326 | biostudies-literature
Project description:EXECUTIVE SUMMARY:Health systems increasingly engage with patient representatives on their governance boards or with patient and family advisory councils to improve care delivery. Little is known about how general patients regard those engagement activities. The objective of this study was to assess the importance of patient representation. We mailed a survey to 31,687 Medicare beneficiaries attributed to a Medicare accountable care organization. We examined relationships between respondents' views and their health characteristics and performed thematic analysis on free-text responses. Among 3,061 respondents, the majority believed that having a patient representative (74.1%) or a patient council (74.0%) mattered "some" or "a lot." The main factors respondents considered in answering were that "patients deserve a voice" (64%) and "having a patient on the [governance] board increases my trust" in this organization (46%). Our analysis of free-text responses illuminated why patient representatives are important, keys to successful engagement, and reasons behind the skepticism. This study indicates that most patients believe representation in health system governance is important, and that realizing its potential requires engagement activities that improve general patients' awareness of, and interaction with, their representatives.
| S-EPMC6865800 | biostudies-literature
Project description:Hazardous chemicals are one of the greatest environmental challenges facing our planet, testing governments in the face of economic and social development. Chemical risks are often complex systemic risks, which require particular governance processes, stakeholder participation mechanisms, and communication procedures to manage. In this article we explore how such processes, mechanisms, and procedures could offer more effective pathways for international chemical risk assessment and management. Combining document analysis with 69 key informant interviews and four focus groups with experts from across government, non-governmental organizations (NGOs) and industry in Canada, the USA and Europe (n = 24), the results highlight the importance of increasing stakeholder participation and risk communication in existing chemical risk assessment and management frameworks. Similarities and differences between the three jurisdictions are discussed with a view to inform future risk governance strategies. The contemporary insights are of relevance to decision-makers seeking to improve the effectiveness of chemical risk governance in practice.
| S-EPMC9110598 | biostudies-literature
Project description:PURPOSE:Despite the evidence, the availability since 2006, and strong recommendations from many professional organizations, the human papillomavirus (HPV) vaccine has had a low uptake rate nationally and these trends have been even lower in the state of Virginia. DESIGN AND METHODS:We explored key stakeholders' perspectives on factors influencing HPV vaccination in central and southern Virginia organized within the socio-ecological model (SEM) framework. We conducted semi-structured key informant interviews with 31 stakeholders involved in HPV vaccination or cancer prevention. RESULTS:Stakeholders identified barriers at all SEM levels: Knowledge gaps and sexuality concerns (parent-child dyad level), time constraint and inconsistent recommendation (interpersonal level), lack of leadership and informational support (organizational and community level), and an ineffective mandate (policy level). Facilitators identified were realistic/receptive attitude (parent-child dyad level), provider's strong recommendation and educational support (interpersonal level), team approach and useful data (organizational level), educational outreach and community resources (community level), and support from federal and professional organizations (policy level). CONCLUSIONS:The stakeholder analysis provided an environmental scan of the barriers and facilitators so that an effective HPV vaccination strategy can be planned and implemented in the Commonwealth of Virginia by public health nurses.
| S-EPMC6140351 | biostudies-literature
Project description:Demand by nursing home residents for involvement in their medical care, or, patient-centered care, is expected to increase as baby boomers begin seeking long-term care for their chronic illnesses. To explore the needs in meeting this proposed demand, we used a qualitative descriptive method with content analysis to obtain the joint perspective of key stakeholders on the current state of person-centered medical care in the nursing home. We interviewed 31 nursing home stakeholders: 5 residents, 7 family members, 8 advanced practice registered nurses, 5 physicians, and 6 administrators. Our findings revealed constraints placed by the long-term care system limited medical involvement opportunities and created conflicting goals for patient-centered medical care. Resident participation in medical care was perceived as low, but important. The creation of supportive educational programs for all stakeholders to facilitate a common goal for nursing home admission and to provide assistance through the long-term care system was encouraged.
| S-EPMC5371402 | biostudies-literature
Project description:BackgroundHuman infection studies (HIS) are valuable in vaccine development. Deliberate infection, however, creates challenging questions, particularly in low and middle-income countries (LMICs) where HIS are new and ethical challenges may be heightened. Consultation with stakeholders is needed to support contextually appropriate and acceptable study design. We examined stakeholder perceptions about the acceptability and ethics of HIS in Malawi, to inform decisions about planned pneumococcal challenge research and wider understanding of HIS ethics in LMICs.MethodsWe conducted 6 deliberative focus groups and 15 follow-up interviews with research staff, medical students, and community representatives from rural and urban Blantyre. We also conducted 5 key informant interviews with clinicians, ethics committee members, and district health government officials.ResultsStakeholders perceived HIS research to have potential population health benefits, but they also had concerns, particularly related to the safety of volunteers and negative community reactions. Acceptability depended on a range of conditions related to procedures for voluntary and informed consent, inclusion criteria, medical care or support, compensation, regulation, and robust community engagement. These conditions largely mirror those in existing guidelines for HIS and biomedical research in LMICs. Stakeholder perceptions pointed to potential tensions, for example, balancing equity, safety, and relevance in inclusion criteria.ConclusionsOur findings suggest HIS research could be acceptable in Malawi, provided certain conditions are in place. Ongoing assessment of participant experiences and stakeholder perceptions will be required to strengthen HIS research during development and roll-out.
| S-EPMC7003337 | biostudies-literature