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9.5 - Theme 5. A Unified Framework for Health Decision-Making and Informing Research

Friday, September 19, 2025
9:15 AM - 10:45 AM

Speaker

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Dr Julian Treadwell
Nihr Academic Clinical Lecturer
University of Bristol

Presenting the benefits and harms of guideline-directed treatments for long-term conditions to general practitioners: development of the GP Evidence website using participatory co-design and a pragmatic approach to evidence collation.

Abstract

Background
Clinical guidelines provide the framework for clinicians to prescribe for long-term conditions(LTCs). However, clinicians have a poor understanding of the absolute benefits and harms of these treatments, impairing their ability to engage in genuine shared decision making or manage complex polypharmacy. There are few accessible and understandable sources of this kind of information.
Objective
To produce a novel website to communicate understandable, usable information to General Practitioners(GPs) on the benefits and harms of treatments for LTCs, in a way which will be usable and useful in everyday clinical practice.
Methods
Patient and Public Involvement with an Expert and Patient Steering Committee.
Qualitative Interview study.
Participatory co-design, including a joint application design workshop, iterative user-testing, focus groups and pair-writing.
User-centred Content Design.
A pragmatic evidence search, review, collation and curation process, drawing principally on NICE and Cochrane reviews.
Evaluation study using online focus groups.
Results
The website www.gpevidence.org was developed providing evidence on treatments for 12 common LTCs.
It employs graphic design and "content-designed" textual information within an information architecture mapping to GPs' practice and mental models.
Evaluation shows it successfully communicates evidence about the benefits and harms of treatments to GPs in a way that is understood and usable in practice.
Discussion
It is possible to communicate quantitative information about the clinical evidence base behind guideline recommendations in a usable way that that complements existing guideline recommendations and normative practice. This may support shared decision making, improve the management of polypharmacy, and improve the quality of evidence-based practice.

Paper Number

111

Biography

Julian is an academic general practitioner with interests in polypharmacy, multiple long-term conditions and evidence-based practice. He developed the website GP Evidence which provides easily accessible and understandable information on the benefits and harms of treatments for long-term conditions. He has additional roles with NICE as a moderator of their GP Reference Panel, was a founding member of the Royal College of General Practitioners standing group on Overdiagnosis and is an associate editor of the Drug and Therapeutics Bulletin.
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Ms Maria Paola Lia
Executive Director
Global Alliance On Health And Pollution

GAHP Health and Pollution Action Plan – A Unified Framework for Health Decision-Making and Research

Abstract

Environmental pollution is a leading contributor to global disease burden, disproportionately affecting vulnerable populations and exacerbating non-communicable and infectious diseases (Landrigan et al., 2018). Addressing this challenge requires a structured, evidence-based approach that bridges scientific research, policy frameworks, and implementation strategies. The GAHP Health and Pollution Action Plan (HPAP) is designed as a framework for health decision-making, supporting governments, policymakers, and health professionals in identifying, evaluating, and prioritizing pollution-related health risks (GAHP, 2023)
Approach:
Each HPAP is country-specific, providing a comprehensive review of pollution challenges, utilizing health, environmental, and economic impact data to present a compelling case for action. The process is led by national agencies, with facilitation from GAHP .
HPAP establishes pollution as a policy priority and to define and advance concrete actions to reduce exposure to pollution and its related health impacts. GAHP works with national and regional governments to foster cross sector collaboration by bringing together stakeholders in government, civil society, and the private sector to develop and implement HPAPs.
Outcomes and Impact:
The HPAP framework provides governments with clear, data-driven insights on where pollution control efforts will yield the greatest health benefits, enabling them to optimize resources and attract international donor support. The goal is to define a roadmap to establish pollution as a policy priority, to mitigate health risks.
Conclusion:
The HPAP process has been implemented in 14 countries so far. It represents a scalable, evidence-based model for tackling environmental pollution through integrated health decision-making. It provides a roadmap for actionable change.

Paper Number

133

Biography

Maria Paola Lia has 20 years of experience establishing and nurturing strategic global health partnerships with government agencies, international organizations, and NGOs across multiple countries and regions. She began her professional training and career in the EU and the Italian Parliament before being elected Secretary General for a political NGO in Brussels. Transitioning to the private sector, Maria Paola assumed the role of Programs Director in a $30 million Global Public-Private Partnership, driving innovative approaches to fortify healthcare systems and advance health policies. She sits on multiple boards. She is currently GAHP Executive Director
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Ms Mirthe Klein Haneveld
Amsterdam umc

Advancing rare disease guidelines: a qualitative study among guideline developers on challenges and best practices

Abstract

Background: Clinical practice guideline (CPG) development for rare diseases is challenging due to the heterogeneity and complexity of diseases, scarce evidence, small expert groups, and limited resources. Critical appraisals of existing rare disease CPGs reveal variable methodological quality.
Objective: We aimed to gather the experiences of rare disease guideline developers to identify methodological challenges and best practices. This study may eventually inform methodological guidance for rare disease CPGs, in the context of the GRADE project group on Rare Diseases.
Methods: We conducted semi-structured interviews with 15 rare disease guideline developers from ten countries and diverse medical fields. Data were analysed through a combined deductive and inductive approach following the structure of the GIN-McMaster Guideline Development Checklist.
Results: Small expert groups, limited methodological expertise, resource constraints, and difficulty in achieving stakeholder representation were often mentioned as challenges in CPG development for rare diseases. Guideline developers adopted pragmatic approaches to utilize scarce, low-level evidence and supplement it with indirect evidence, biomedical knowledge, expert evidence, and/or registry data. The GRADE methodology was valued for providing transparency, structure, and consistency, but some considered it laborious, inefficient, or counterproductive in rare disease contexts. Topics beyond the GIN-McMaster Guideline Development Checklist included deciding which type of knowledge document to develop and supporting the broader knowledge cycle, e.g. through knowledge agendas, reporting guidelines, and outcome measures.
Discussion: We identified a need for guidance and method development to improve guideline development processes for rare diseases and gained insight into the most salient methodological issues.

Paper Number

89

Biography

Trained as a medical doctor and a care ethicist, I am currently working as a PhD candidate to improve clinical practice guideline development for rare diseases within the European Reference Network ITHACA for rare malformation syndromes and rare intellectual and neurodevelopmental disorders.
Dr, Prof Janne Estill
Lanzhou University

Validation of the CARE-Radiology Reporting Guideline for Effectiveness and Feasibility: A Cluster Randomized Controlled Trial

Abstract

Background: Case reports are essential in medical literature, yet the effectiveness of reporting guidelines like the CAse REport (CARE) and its radiology-specific extension, CARE-Radiology (CARR), remains insufficiently validated. This study addresses the need for empirical evidence on CARR’s utility in enhancing radiology case report quality.

Objective: To evaluate the effectiveness and feasibility of the CARR guidelines in improving the quality of radiology case reports through a cluster randomized controlled trial.

Methods: In a three-arm, double-blind, multicenter trial, 62 radiology professionals from 21 institutions across five Chinese regions were randomized to CARR, CARE, or control groups. Following standardized training, participants wrote case reports based on provided clinical data. An independent panel assessed the reports for completeness, clarity, risk of bias, and other outcomes using standardized scales.

Results: The CARR group outperformed others in completeness (mean difference 1.50, P=0.01), clarity, and CARR assessment scores (mean 24.2 vs. 16.0 in control, P<0.001), with higher JBI scores (6.6 vs. 5.7 in CARE, P=0.03). The CARE group completed reports faster (median 300 vs. 480 minutes in CARR, P=0.02) but with lower quality. No significant differences emerged in perceived writing difficulty or publication suitability.

Discussion: Both CARR and CARE enhance reporting quality, with CARR excelling in radiology-specific contexts, underscoring the value of structured guidance. Future research should explore CARR’s global applicability and integration into journal standards.

Paper Number

433

Biography

Mengshu Wang, a radiologist.
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Dr Antonio Bognanni
Humanitas University

Harmonizing terminology for so-called ‘’real-world’’ evidence: a structured glossary to enhance transparency in health research and decision-making

Abstract

Background: The growing reliance on so-called “real-world evidence” (“RWE”) in healthcare decision-making has raised concerns about inconsistent terminology and the absence of a standardized taxonomy. This lack of clarity hinders transparency and the appropriate use of RWE, increasing the risk of misuse or misinterpretation.

Objective: To develop a consensus-based glossary with a breakdown of concepts that provide a standardized reference for researchers, guideline developers, regulators, and policymakers to improve interpretation, use and reporting of ‘’RWE’’.

Methods: We manually searched published literature, regulatory documents, and glossaries to compile a list of RWE-related terms. A panel of 36 experts, including methodologists, regulatory experts, and guideline developers, iteratively refined the list through three survey rounds.

Panelists provided narrative feedback and voted on (I) term inclusion/exclusion, (II) classification of terms’ relevance in facilitating the understanding/use of ‘’RWE’’, and (III) agreement with definitions. Terms reaching 80% consensus were included, while others underwent revision and re-voting. Terms not achieving consensus after three rounds were labeled as "Controversial".

Results: The preliminary glossary includes 89 terms classified as “critical” or “important”. It promotes a structured and transparent reporting of (i) data sources, (ii) intervention/exposure assignment, (iii) randomization, and (iv) primary data collection vs. secondary data use.

Discussion: This glossary provides a foundation for more consistent, and transparent reporting of data from different sources, including the so-called “RWE”. By addressing challenges related to terminological heterogeneity and vagueness, it fosters improved communication and enhances the reliability of RWE use in primary research, guidelines, and regulatory frameworks.

Paper Number

480

Biography

Research Fellow - Humanitas University, Italy, Clinical Epidemiology and Research Center PhD candidate - McMaster University, Canada, Department of Health Research Methods, Evidence and Impact GRADE working group member Interest fields: Evidence synthesis, Guidelines, Health Research Methods for study design and decision-making
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