Stakeholder participation in IPBES: connecting local environmental work with global decision making.
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ABSTRACT:
SUBMITTER: Krug CB
PROVIDER: S-EPMC7484931 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundMeta-analysis is often used to make generalisations across all available evidence at the global scale. But how can these global generalisations be used for evidence-based decision making at the local scale, if the global evidence is not perceived to be relevant to local decisions? We show how an interactive method of meta-analysis-dynamic meta-analysis-can be used to assess the local relevance of global evidence.ResultsWe developed Metadataset ( www.metadataset.com ) as a proof-of-concept for dynamic meta-analysis. Using Metadataset, we show how evidence can be filtered and weighted, and results can be recalculated, using dynamic methods of subgroup analysis, meta-regression, and recalibration. With an example from agroecology, we show how dynamic meta-analysis could lead to different conclusions for different subsets of the global evidence. Dynamic meta-analysis could also lead to a rebalancing of power and responsibility in evidence synthesis, since evidence users would be able to make decisions that are typically made by systematic reviewers-decisions about which studies to include (e.g. critical appraisal) and how to handle missing or poorly reported data (e.g. sensitivity analysis).ConclusionsIn this study, we show how dynamic meta-analysis can meet an important challenge in evidence-based decision making-the challenge of using global evidence for local decisions. We suggest that dynamic meta-analysis can be used for subject-wide evidence synthesis in several scientific disciplines, including agroecology and conservation biology. Future studies should develop standardised classification systems for the metadata that are used to filter and weight the evidence. Future studies should also develop standardised software packages, so that researchers can efficiently publish dynamic versions of their meta-analyses and keep them up-to-date as living systematic reviews. Metadataset is a proof-of-concept for this type of software, and it is open source. Future studies should improve the user experience, scale the software architecture, agree on standards for data and metadata storage and processing, and develop protocols for responsible evidence use.
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Project description:BackgroundShared decision-making is the gold standard for good clinical practice, and thus, psychometric instruments have been established to assess patients' generic preference for participation (e.g., the Autonomy Preference Index, API). However, patients' preferences may vary depending on the specific disease and with respect to the specific decision context. With a modified preference index (API-Uro), we assessed patients' specific participation preference in preference-sensitive decisions pertaining to urological cancer treatments and compared this with their generic participation preference.MethodsIn Study 1, we recruited (N = 469) urological outpatients (43.1% urooncological) at a large university hospital. Participation preference was assessed with generic measures (API and API case vignettes) and with the disease-specific API-Uro (urooncological case vignettes describing medical decisions of variable difficulty). A polychoric exploratory factor analysis was used to establish factorial validity and reduce items. In Study 2, we collected data from N = 204 bladder cancer patients in a multicenter study to validate the factorial structure with confirmatory factor analysis. Differences between the participation preference for different decision contexts were analyzed.ResultsStudy 1: Scores on the specific urooncological case vignettes (API-Uro) correlated with the generic measure (r = .44) but also provided incremental information. Among the disease-specific vignettes of the API-Uro, there were two factors with good internal consistency (α ≥ .8): treatment versus diagnostic decisions. Patients desired more participation for treatment decisions (77.8%) than for diagnostic decisions (22%), χ2(1) = 245.1, p ≤ .001. Study 2: Replicated the correlation of the API-Uro with the API (r = .39) and its factorial structure (SRMR = .08; CFI = .974). Bladder cancer patients also desired more participation for treatment decisions (57.4%) than for diagnostic decisions (13.3%), χ²(1) =84, p ≤ .001.ConclusionsThe desire to participate varies between treatment versus diagnostic decisions among urological patients. This underscores the importance of assessing participation preference for specific contexts. Overall, the new API-Uro has good psychometric properties and is well suited to assess patients' preferences. In routine care, measures of participation preference for specific decision contexts may provide incremental, allowing clinicians to better address their patients' individual needs.
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Project description:Background: Shared Decision-Making (SDM) is an inclusive approach where patients and providers work in partnership to make health care decisions that are grounded in clinical best practice and align with patient preferences and values. Despite a growing recognition that SDM can lead to improved outcomes and reductions in unnecessary health investigations, tensions exist between patient agency and a historically paternalistic model of health care. As an evolving ideology, the Research Team sought to better understand the current state, challenges, and implementation opportunities of SDM practices across the health system. Methods: This study used a cross-sectional quality improvement design utilizing semistructured interviews to gather information from focus group participants. Five open-ended, qualitative questions were used to generate discussion on the perceptions of SDM and its role in clinical appropriateness in a variety of clinical contexts in our health system. A total of 12 focus groups (n = 95 participants) representative of patients and families, leaders, physicians, and frontline clinicians were engaged in the study. Results: Through a consensus-based approach, study results identified 4 recommendations based on 4 themes: Time, Communication, System Design, and Clinical Appropriateness. Conclusion: There are no easy solutions to the challenges of enabling SDM; however, success will be dependent upon recognizing the importance of patient agency, while maintaining an inclusive and continuous stakeholder engagement with both patients and providers. Implementation of the 4 recommendations at the organizational level highlighted in this study can serve as a road map for other health care institutions and will require a gradual approach to transform the general principles of SDM into tangible solutions to meet the emerging needs at both the local and system level.
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