Health Research Policy and Systems最新文献

{"title":"Supporting policymakers with a decision aid to evaluate the impact of e-cigarette flavour restrictions.","authors":"Angela S Attwood, Jennifer Ferrar, Mark J Gibson, Martin Dockrell, Marcus R Munafò, Jasmine N Khouja","doi":"10.1186/s12961-026-01494-1","DOIUrl":"10.1186/s12961-026-01494-1","url":null,"abstract":"<p><strong>Background: </strong>The UK Government has introduced a range of measures to tackle the rise in youth vaping, including the power to regulate flavours. Evidence is needed to inform how these measures should be implemented, but communication between health researchers and policymakers can be difficult. Policymakers need a simple, easy-to-digest synthesis of evidence to make policy decisions that benefit the public.</p><p><strong>Methods: </strong>We designed a policy decision aid to support policymakers (commissioned by Public Health England), whereby existing data can be inputted to create a report (the decision aid). The report estimates whether restricting flavours other than tobacco or menthol flavours in e-cigarettes would have a net benefit due to reductions in youth vaping and smoking or a net detriment due to the negative impact on smoking cessation and relapse rates.</p><p><strong>Results: </strong>Using the available evidence on 13 November 2024, the model estimated that 125,034 non-smoking youth experiment with e-cigarettes as a result of flavoured e-liquid availability, and 841,302 smokers and ex-smokers do not smoke due to flavoured e-liquid availability. The model estimated that 48,764 non-smoking youth subsequently smoke as a result of flavoured e-liquid availability. The algorithm indicated that if only unflavoured, tobacco flavoured or menthol flavoured vapes remained on the market, there would be a detrimental impact on smoking rates in adults that would outweigh the number of young people protected from vaping and later smoking.</p><p><strong>Conclusions: </strong>This output suggests that restricting flavoured e-liquids in the United Kingdom could have a detrimental impact on public health when considering both youth vaping and smoking uptake due to flavoured vape availability. To provide timely advice to policymakers, the algorithm used is intentionally simple. The decision aid should be used alongside existing relevant evidence (e.g. from countries with similar regulatory environments) to inform policy decisions and/or used to highlight areas for research that warrant support. The reports have been used in policy documents and discussions, demonstrating an appetite for this type of communication aid. The tool can be used to assess this policy question within subpopulations and in other localities, and the framework can be adopted to address other policy questions.</p>","PeriodicalId":12870,"journal":{"name":"Health Research Policy and Systems","volume":" ","pages":""},"PeriodicalIF":3.8,"publicationDate":"2026-06-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13495304/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148257970","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Correction: Engaging patients throughout the continuum of implementation science and practice: adapted evidence mapping review and practical guide for clinicians and researchers.","authors":"Lauren Steeves, Srinivas Sampalli, Robin Urquhart","doi":"10.1186/s12961-026-01497-y","DOIUrl":"10.1186/s12961-026-01497-y","url":null,"abstract":"","PeriodicalId":12870,"journal":{"name":"Health Research Policy and Systems","volume":"24 1","pages":""},"PeriodicalIF":3.8,"publicationDate":"2026-06-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13267748/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148257973","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Using participatory methods to develop context-specific local government actions to create healthy food and physical activity environments for school-aged children: a case study in Flanders.","authors":"Jessie Van Kerckhove, Maïté Verloigne, Leonor Guariguata, Stefanie Vandevijvere","doi":"10.1186/s12961-026-01495-0","DOIUrl":"10.1186/s12961-026-01495-0","url":null,"abstract":"<p><strong>Introduction: </strong>Childhood overweight and obesity represent major public health concerns globally, influenced by food and physical activity environments. In the absence of strong national or regional policies, there has been an increasing interest from local government jurisdictions to address obesity. This study aimed to apply three distinct participatory methods to engage different community groups in a medium size, socio-economically deprived municipality in Flanders (Belgium), to identify context-specific barriers and facilitators to healthy eating and physical activity from the perspective of these groups, and to propose locally relevant strategies.</p><p><strong>Methods: </strong>We used group model building with actors (local government officials, health representatives, school representatives and youth workers), Photovoice with children and interviews with parents and teachers. An inductive-deductive approach was used to analyse the different outputs and combine the barriers and facilitators across groups in different themes.</p><p><strong>Results: </strong>In total, 15 actors participated in three group model building sessions, 66 children participated in five group Photovoice sessions, 14 children in one-on-one Photovoice sessions and 10 parents/teachers consented to an interview. Barriers and facilitators were identified across three themes: the obesogenic food environment (e.g. relative presence of healthy food outlets, supermarket proximity), the physical activity environment (e.g. an unsafe road environment discouraging active transportation, poorly designed play spaces) and the socio-economic environment (e.g. time and financial constraints for vulnerable groups, knowledge on poverty). By including the perspective of children and parents, actors could better understand the lived experience of their community and propose context-specific actions to tackle the identified barriers and facilitators. Proposed actions included offering healthy hot meals at school, attracting local markets to food deserts, designing car-free school streets, (re)designing playgrounds and increasing exchanges between community members and the local government.</p><p><strong>Conclusions: </strong>This study demonstrates a promising approach to meaningfully engage different community groups in identifying barriers and facilitators for healthy eating and physical activity at the local level. By addressing the barriers and facilitators across multiple settings, local governments can take concrete steps towards creating healthier and context-adapted environments for future generations.</p>","PeriodicalId":12870,"journal":{"name":"Health Research Policy and Systems","volume":" ","pages":""},"PeriodicalIF":3.8,"publicationDate":"2026-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13440114/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148143350","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Opening the black box of co-creation: exploring process delivery, stakeholder experiences and perceived outcomes in the development of a family-based healthy weight development intervention for infants.","authors":"Lene Kierkegaard, Camilla Thørring Bonnesen, Rikke Rothkegel Carlsson, Trine Pagh Pedersen, Mette Rasmussen, Nanna Gram Ahlmark, Rikke Fredenslund Krølner","doi":"10.1186/s12961-026-01486-1","DOIUrl":"10.1186/s12961-026-01486-1","url":null,"abstract":"<p><strong>Background: </strong>Co-creation has gained prominence in public health intervention research, as stakeholder involvement is expected to strengthen implementation and effectiveness. Its growing popularity highlights the need for a critical examination of how co-creation is conceptualized and operationalized. This study examines: (1) the delivery of the co-creation process; (2) stakeholders' experienced involvement; and (3) perceived outcomes, including how the process shaped the intervention design and stakeholders' perceived value of participation. The co-creation centred on developing The Bloom Study, an early intervention to promote healthy weight development amongst infants integrated in the Danish community health nurse system.</p><p><strong>Methods: </strong>The co-creation activities comprised six workshops and eight group meetings with a Participatory Planning Group of community health nurses, researchers and facilitators, supplemented by four parent group interviews. The evaluation followed a qualitative research design, combining multiple data sources: transcripts from co-creation activities, a joint oral evaluation and individual interviews with the Participatory Planning Group participants. Analysis was guided by the PROcesS Evaluation framework for CO-creation (PROSECO) framework.</p><p><strong>Results: </strong>(1) The co-creation process was delivered as intended, though parental involvement was challenging. (2) Participants perceived themselves as highly involved, but still viewed the intervention primarily as the researchers' project. The Participatory Planning Group demonstrated strong motivation and constructive group dynamics. Despite initial uncertainty about their roles, they felt they were able to meaningfully influence the intervention. (3) The Participatory Planning Group valued the co-creation process as a reflective space that enabled knowledge exchange. The intervention was shaped through iterative negotiation, integration of research and practice knowledge, and adaptation to contextual constraints. Although parental involvement was limited, their input helped refine materials and address parental needs.</p><p><strong>Conclusions: </strong>This study provides empirical insight into how co-creation unfolds within a health system context. Meaningful stakeholder involvement was constrained by structural and temporal conditions tied to the research project, including fixed timelines. Despite these limitations, the process supported contextually grounded adaptations, strengthened stakeholder ownership and enhanced responsiveness to local needs. The critical application of the PROSECO framework helped \"opening the black box\" of co-creation and offers implications for health systems, particularly regarding how participatory approaches can inform implementation practices.</p>","PeriodicalId":12870,"journal":{"name":"Health Research Policy and Systems","volume":" ","pages":""},"PeriodicalIF":3.8,"publicationDate":"2026-05-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13404867/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148054358","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Advancing the systematic implementation of patient experience data in healthcare decision-making: multi-stakeholder insights on barriers, opportunities and policy ways forward.","authors":"Alice Vanneste, Io Wens, Peter Sinnaeve, Tom Adriaenssens, Isabelle Huys","doi":"10.1186/s12961-025-01438-1","DOIUrl":"10.1186/s12961-025-01438-1","url":null,"abstract":"<p><strong>Background: </strong>Patient experience data (PED), including patient-reported outcomes (PROs), patient-reported experiences (PREs), patient preferences (PPs), and patient input, are instrumental to better understand patients' perspectives and inform decision-making. Healthcare decision-makers increasingly recognize the value of PED, but challenges impede its implementation in practice. This qualitative study aims to identify stakeholders' insights on these barriers, as well as opportunities and concrete policy ways forward for systematically implementing PED in healthcare decision-making.</p><p><strong>Methods: </strong>Semistructured interviews (n = 38) were conducted with stakeholders from healthcare industry, academia, non-profit organizations, regulatory authorities, pricing and reimbursement (P&R) agencies, and patient organizations across Europe. The interviews were transcribed ad verbatim and analysed qualitatively using thematic framework analysis.</p><p><strong>Results: </strong>Stakeholders raised several barriers impeding the integration of PED in healthcare decision-making: (1) lack of clear European policy frameworks and guidance on standardized requirements and quality criteria for collecting and evaluating PED, particularly concerning the design and implementation of PP studies, (2) lack of validated methods and tools for collecting high-quality PED, such as validated PRO measures, and (3) limited knowledge and transparency on the assessment of PED in regulatory and P&R decision-making. Stakeholders emphasized the importance of providing training on effective patient involvement and more research on validated methods and fit-for-purpose tools. Stakeholders emphasized the importance of fostering collaboration and open dialogue among all stakeholders. Developing guidelines and a comprehensive policy strategy that clearly delineates expectations and responsibilities for each stakeholder group was seen as an important way forward.</p><p><strong>Conclusions: </strong>This policy- and practice-oriented qualitative study identified concrete ways to advance the systematic use of PED in healthcare decision-making. Suggested actions include developing validated and standardized methods and tools, co-created and flexible guidelines and a clear European policy framework delineating expectations and responsibilities. While there was broad alignment on the direction forward, views diverged on who should take the lead in initiating these efforts, underscoring the importance of continued coordination across stakeholder groups.</p>","PeriodicalId":12870,"journal":{"name":"Health Research Policy and Systems","volume":"24 1","pages":""},"PeriodicalIF":3.8,"publicationDate":"2026-05-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13217906/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148054410","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"International multi-stakeholder collaboration to support implementation of cancer care efficiency metrics: a qualitative study to develop the All.Can Action Guide.","authors":"Ana Sofia V Carvalho, Óscar Brito Fernandes, Damir Ivanković, Erica Barbazza, Eduardo Pisani, Niek Klazinga, Dionne Kringos","doi":"10.1186/s12961-026-01493-2","DOIUrl":"10.1186/s12961-026-01493-2","url":null,"abstract":"<p><strong>Background: </strong>Cancer care efficiency contributes to overall healthcare systems performance. However, many healthcare systems experience challenges in measuring it effectively. All.Can, a multi-stakeholder organization working to improve cancer care efficiency, has identified eight cancer metrics as a starting point for standardizing efficiency measurement, focussing on timeliness of care, coordination of care and patient-centredness. This study aims to identify barriers and enablers to implementing these metrics globally and to describe the co-development of a guide to support stakeholders in embedding these metrics into healthcare workflows.</p><p><strong>Methods: </strong>This qualitative study used a co-development approach in collaboration with the All.Can community. Semi-structured interviews were conducted to identify barriers, enablers and good practices in implementing cancer care efficiency metrics. Data were analysed using a combination of deductive and inductive coding, guided in part by the Implementation in Context (ICON) framework. A qualitative content analysis was conducted to explore the perceived actionability of contextual factors, which informed the development of an Action Guide grounded in health systems research principles. The guide was reviewed by potential end-users and launched in September 2024.</p><p><strong>Results: </strong>A total of 40 informants from 21 countries participated in semi-structured interviews. Regulatory influences were most frequently cited as relevant factors for implementing timeliness-of-care metrics. Barriers included fragmented or missing regulations on cancer data collection and limited database interoperability, whilst enablers involved national strategies and standardized care pathways. For coordination-of-care metrics, regulatory issues were again central, notably the lack of regulation defining roles such as oncology nurses and care coordinators. Political influences emerged prominently for patient-reported metrics, including lack of funding and absence of systematic data collection strategies. Advocacy was often seen as a key enabler. These informed the development of an Action Guide, intended to support the implementation of cancer care metrics.</p><p><strong>Conclusions: </strong>This study identified contextual barriers and enablers for implementing cancer efficiency metrics and described the co-development of the All.Can Action Guide as a practical tool for policymakers, care providers and advocates. Through mapping priority areas for action, this study may strengthen data-driven decision-making, enhance timeliness and coordination of care, and ultimately improve patient outcomes and experiences worldwide.</p>","PeriodicalId":12870,"journal":{"name":"Health Research Policy and Systems","volume":" ","pages":""},"PeriodicalIF":3.8,"publicationDate":"2026-05-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13403385/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148054395","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Structural analysis and causal loop modelling: an integrated systems approach to analysing perinatal service delivery in carceral settings in Ontario, Canada.","authors":"Xaand Bancroft, Amy McGee, Lisa Morgan, Audrey Ferron Parayre, Wendy E Peterson","doi":"10.1186/s12961-026-01491-4","DOIUrl":"10.1186/s12961-026-01491-4","url":null,"abstract":"<p><strong>Background: </strong>In Ontario, Canada, incarcerated individuals and their newborns have adverse health outcomes. Perinatal care delivery in these settings is complex and fragmented across health, social service and carceral systems. This study aimed to apply and demonstrate an integrated systems-based analytical approach to examine dynamic interactions within carceral perinatal care and to identify influential variables and leverage points for policy and service improvement.</p><p><strong>Methods: </strong>Using qualitative interview data from individuals who experienced incarceration while pregnant and from healthcare and social service providers, we applied an integrated methodological framework combining structural analysis (MICMAC) and causal loop diagramming. This stepwise approach was used to identify system variables, map causal pathways and feedback loops, and assess influence-dependence relationships within Ontario's carceral perinatal care system.</p><p><strong>Results: </strong>Our analysis identified two key variables as central drivers of system behaviour through reinforcing and balancing loops, respectively: carceral staff autonomy and availability of providers. High levels of carceral staff autonomy reinforce power imbalances by decreasing providers' autonomy, which in turn constrains perinatal care delivery. Availability of providers operates within a balancing loop, whereby increased availability strengthens incarcerated clients' autonomy and increases their knowledge of human rights. Advocacy was identified as a key leverage point for navigating power dynamics within the system.</p><p><strong>Conclusions: </strong>This study demonstrates the utility of integrating structural analysis with causal loop modelling to examine institutional dynamics, constraints and leverage points in complex health service systems. By identifying advocacy and comprehensive rights training as potentially essential interventions, alongside policy modifications, these findings highlight actionable pathways to reduce power imbalances and improve perinatal health outcomes among incarcerated individuals and their newborns. The approach provides a transferable framework for understanding complex and fragmented service delivery contexts and for informing evidence-based health policy and implementation strategies.</p>","PeriodicalId":12870,"journal":{"name":"Health Research Policy and Systems","volume":" ","pages":""},"PeriodicalIF":3.8,"publicationDate":"2026-05-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13292505/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148042088","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A methodological framework for establishing regional disease-specific health research priorities (the RDHRP Framework).","authors":"Xiayan Chen, Xianghui Zhang, Qianqian Li, Yanjun Ma, Siyu Chen, Yifang Yuan, Yangfeng Wu","doi":"10.1186/s12961-026-01492-3","DOIUrl":"10.1186/s12961-026-01492-3","url":null,"abstract":"<p><strong>Background: </strong>Setting regional disease-specific health research priorities is essential for guiding the development of the local health system and even the society through research. However, existing priority-setting approaches either rely heavily on opinions and lack transparent and reproducible procedures or demand intensive technical resources and are time-consuming. This study aimed to develop a structured, disease-specific, regionally adaptable methodological framework to address these gaps.</p><p><strong>Methods: </strong>A multidisciplinary working group with expertise in public health and clinical research methodology was established to develop the framework, with consultation from an expert panel in clinical medicine and health research administration. Through iterative discussions, the group defined five guiding principles: gap-oriented, evidence-based, disease-life-cycle-covered, aligned with clinical practice realities and reproducible and transparent. Based on these principles, the analytical steps of the framework were proposed, refined through expert review and pilot tested using gastric cancer and other diseases.</p><p><strong>Results: </strong>A framework consisting of seven sequential steps and a generic health matrix template was developed and named the Regional Disease-Specific Health Research Priorities (RDHRP) Framework: (1) defining the research scope; (2) developing a disease-specific matrix for data search; (3) retrieving and processing indicator-based evidence; (4) synthesizing evidence and linking performance gaps to generate actionable research priorities; (5) drafting the preliminary report; (6) consulting experts and stakeholders; and (7) reporting, dissemination and monitoring. Applied to gastric cancer, the RDHRP Framework consistently identified system-level performance gaps between China and countries advanced in this area, explored underlying causes, reduced subjective topic selection and improved the alignment of proposed research questions with measurable health system needs. The case study produced a focused set of research priorities for China in gastric cancer research: community-based surveillance systems; scalable techniques for early identification, screening and diagnosis; Helicobacter pylori prevention and eradication strategies; and molecular classification, target discovery and innovative therapeutics development.</p><p><strong>Conclusions: </strong>The RDHRP Framework provides a transparent, reproducible and adaptable approach for generating regional disease-specific health research priorities anchored in objective evidence and causal reasoning. Future work is warranted to evaluate its utility in diverse global settings, recognizing that resulting priorities may vary depending on disease, regional context and evolving evidence.</p>","PeriodicalId":12870,"journal":{"name":"Health Research Policy and Systems","volume":" ","pages":""},"PeriodicalIF":3.8,"publicationDate":"2026-05-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13393620/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148015238","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Engaging patients throughout the continuum of implementation science and practice: adapted evidence mapping review and practical guide for clinicians and researchers.","authors":"Lauren Steeves, Srinivas Sampalli, Robin Urquhart","doi":"10.1186/s12961-026-01479-0","DOIUrl":"10.1186/s12961-026-01479-0","url":null,"abstract":"<p><strong>Background: </strong>The role of patients in healthcare is dramatically changing. Patients have increased autonomy and responsibility for managing care interventions that influence their morbidity, mortality, and quality of life. Engagement of patients to meaningfully participate in health research, care, and decision-making is limited, negatively impacting diverse outcomes. Implementation science (IS) and patient engagement (PE) strive to improve patient care and outcomes. Integration of IS and PE may aid researchers/healthcare teams in engaging patients and improving outcomes. There is a paucity of literature and guidance to support integration of IS and PE. The aims of this research are to (1) present an overview of select IS theories/frameworks, strategies, outcomes, and reporting guidelines that may facilitate PE and (2) present a framework outlining opportunities within the IS research process to integrate PE approaches.</p><p><strong>Main text: </strong>There are common theoretical constructs, identified across IS theories/frameworks, that may facilitate PE. Examples of such constructs include \"engagement\" and \"patient/target audience characteristics and needs\". In addition, 6 of the top 10 most cited IS theories/frameworks include more than one (> 3) of these constructs. Evidence-informed implementation strategies are indexed and categorized into thematic clusters in the published results of the Expert Recommendations for Implementing Change (ERIC) project. Examples of implementation strategies that may facilitate PE include \"conduct educational meetings\" and \"prepare patients/consumers to be active participants\". Proctor et al. propose a working taxonomy of implementation outcomes for IS research. Implementation outcomes that may facilitate measurement of PE-relevant outcomes include satisfaction, function, and symptomatology. There are no reporting guidelines that include both IS and PE research reporting recommendations. IS reporting guidelines such as Standards for Reporting Implementation Studies (StaRI) may be extended by combining them with existing PE-reporting guidelines such as the Guidance for Reporting Involvement of Patients and the Public (GRIPP) 2 reporting checklist.</p><p><strong>Conclusions: </strong>There are IS theories/frameworks, strategies, and outcomes that may facilitate PE. PE-informed selection of IS methodologies is critical to improving patient outcomes by optimizing the patient's role in research, care, and health system decision-making. This article proposes a framework outlining important stages of IS research at which PE strategies, outcomes, and reporting guidelines may be suitable to integrate.</p>","PeriodicalId":12870,"journal":{"name":"Health Research Policy and Systems","volume":"24 1","pages":""},"PeriodicalIF":3.8,"publicationDate":"2026-05-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13185304/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147972157","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Available guidance for ethical challenges in learning health systems: an integrative literature review.","authors":"Sara J M Laurijssen, Rieke van der Graaf, Rolf H H Groenwold, Martine C de Vries, Wouter B van Dijk, Ewoud Schuit","doi":"10.1186/s12961-026-01490-5","DOIUrl":"10.1186/s12961-026-01490-5","url":null,"abstract":"<p><strong>Background: </strong>Learning health systems (LHSs) aim to integrate continuous learning into routine care, yet their development raises persistent ethical challenges. Questions remain about when and how informed consent should be obtained, how ethical oversight should be organized for learning activities that blur the boundary between care and research, and what system-level conditions are necessary to support ethically sound learning.</p><p><strong>Objective: </strong>This integrative review synthesizes ethical recommendations for the design, implementation and evaluation of LHSs, and aims to provide practical guidance and identify gaps in the current literature.</p><p><strong>Methods: </strong>A systematic search of PubMed, Web of Science and a search on LinkedIn on 22 October 2025 identified studies offering explicit ethical recommendations related to LHSs. Eligible studies were situated within an existing LHS and provided at least one actionable ethical recommendation. Data were extracted and analysed using Friedman's LHS functioning cycle of three knowledge-to-action steps: data to knowledge, knowledge to practice and practice to data.</p><p><strong>Results: </strong>In total, 44 studies met the inclusion criteria. Ethical guidance was unevenly distributed across Friedman's cycle. Most studies (n = 32) focused on transforming data into knowledge, addressing data governance, patient autonomy, consent models and ethical prerequisites for artificial intelligence (AI). Far fewer studies (n = 6) examined translating knowledge into practice, where attention centred on the ethical implementation of AI, workflow integration and risk mitigation. The final step, feeding performance back into new data, was represented (n = 6), with limited guidance on accountability, continuous monitoring and equitable interpretation of performance outcomes. Across all stages, informed consent and ethical oversight emerged as dominant themes, though considerable variation existed in how institutions operationalized these concepts.</p><p><strong>Conclusions: </strong>Current ethical discourse in LHSs remains focused mainly on transforming data to knowledge. Relatively limited recommendations for ethical implementation of other action steps were identified. In addition, some of the recommendations contradicted each other or offered differing advice on aspects of the ethical implementation of LHS (for instance, on informed consent and ethical review). This imbalance highlights the need for context-sensitive governance models, empirical evaluation of ethical practices in real-world LHSs and regulatory frameworks that reflect the dynamic nature of continuous learning.</p>","PeriodicalId":12870,"journal":{"name":"Health Research Policy and Systems","volume":" ","pages":""},"PeriodicalIF":3.8,"publicationDate":"2026-05-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13349059/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147941301","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}