Unlocking the genomic landscape: Results of the Beyond 1 Million Genomes (B1MG) pilot in Belgium towards Genomic Data Infrastructure (GDI).

Genomic medicine has great potential to offer insights into how humans' genetic variation can affect their health, prevention options and treatment responses. The Beyond 1 Million Genomes (B1MG) project was kicked off in 2020 with the aim of building a federated network of genomic data in Europe, in which Belgium took part as a piloting country. B1MG developed a framework to enable all interested countries to self-evaluate the level of maturity of national genomic medicine practices following a common matrix, called Maturity Level Model (MLM), that contained 49 indicators across eight domains: I. Governance and strategy; II. Investment and economic model; III. Ethics, legislation and policy; IV. Public awareness and acceptance; V. Workforce skills and organisation; VI. Clinical organisation, infrastructure and tools; VII. Clinical genomics guidelines and infrastructure; and VIII. Data management, standards and infrastructure. The ongoing Genomic Data Infrastructure (GDI) project aims to capitalise on the experience of B1MG piloting countries and their MLM results. In this paper, we present the qualitative and quantitative outcomes of B1MG MLM assessment in Belgium and discuss their relevance to GDI. The insights gained from this study can be helpful for steering future policy directions and interventions on genomics in Belgium and beyond.

Contextual factors influencing the equitable implementation of precision medicine in routine cancer care in Belgium.

BACKGROUND: Precision medicine represents a paradigm shift in health systems, moving from a one-size-fits-all approach to a more individualized form of care, spanning multiple scientific disciplines including drug discovery, genomics, and health communication. This study aims to explore the contextual factors influencing the equitable implementation of precision medicine in Belgium for incorporating precision medicine into routine cancer care within the Belgian health system. METHODS: As part of a foresight study, our approach evaluates critical factors affecting the implementation of precision oncology. The study scrutinizes contextual, i.e. demographic, economic, societal, technological, environmental, and political/policy-related (DESTEP) factors, identified through a comprehensive literature review and validated by a multidisciplinary group at the Belgian Cancer Center, Sciensano. An expert survey further assesses the importance and likelihood of these factors, illuminating potential barriers and facilitators to implementation. RESULTS: Based on the expert survey, five key elements (rising cancer rates, dedicated healthcare reimbursement budgets, increasing healthcare expenditures, advanced information technology solutions for data transfer, and demand for high-quality data) are expected to influence the equitable implementation of precision medicine in routine cancer care in Belgium in the future. CONCLUSIONS: This work contributes to the knowledge base on precision medicine in Belgium and public health foresight, exploring the implementation challenges and suggesting solutions with an emphasis on the importance of comparative analyses of health systems, evaluation of health technology assessment methods, and the exploration of ethical issues in data privacy and equity.

Prioritizing health information for national health reporting - a Delphi study of the Joint Action on Health Information (InfAct).

BACKGROUND: Health information (HI) strategies exist in several EU Member States, however, they mainly focus on technical issues and improving governance rather than on content-related priority setting. There is also little research available about national prioritization processes underlying HI development for policy support in the EU. The aim of this study was to broaden the knowledge base on HI prioritization strategies and to encourage expert exchange towards good practice models. A specific focus was put on HI produced for national health reporting, this being a crucial tool for policy advice. METHODS: We conducted a literature search to identify published and grey literature on national HI prioritization. This was followed by a two-round Policy Delphi study, where we explored which processes and methods exist in EU Member States and associated countries for the prioritization of HI collection. In the first round, information about these processes was gathered in semi-structured questions; in the second round, participants were asked to rank the identified approaches for desirability and feasibility. The survey was conducted online; participants were recruited from the membership of the Joint Action on Health Information (InfAct - Information for Action). RESULTS: 119 experts were contacted, representing 40 InfAct partner institutions in 28 EU Member States and associated countries. Of these, 28 experts responded fully or partially to the first round, and six to the second round. In the first round, more than half of the respondents reported the existence of structured HI prioritization processes in their countries. To prioritize HI, a clear preference was given in the second round for a formal, horizontal process which includes different experts and stakeholders. National public health institutes were named desirable key stakeholders in this process, and also desirable and feasible coordinators for stakeholder coordination. CONCLUSION: Health information prioritization methods and procedures reflect the heterogeneity of national public health systems in European countries. Mapping, sharing and ranking prioritization methods and procedures for "good practices" provides a meaningful basis for expert knowledge exchange on HI development. We recommend to make this process part of a future sustainable EU health information system and to use the information gathered in this project to initiate the development of a guidance "Good Practice HI Prioritization" among EU Member States and associated countries.

Developing a tool to monitor knowledge translation in the health system: results from an international Delphi study.

BACKGROUND: It is generally accepted that evidence-informed decision making contributes to better health system performance and health outcomes, yet we are lacking benchmarks to monitor the impact of national health information systems (HIS) in policy and practice. Hence in this study, we have aimed to identify criteria for monitoring Knowledge Translation (KT) capacity within countries. METHODS: We conducted a web-based Delphi with over 120 public health professionals from 45 countries to reach agreement on criteria to monitor KT at the level of national HIS. Public health professionals participated in three survey rounds, in which they ranked 85 preselected criteria and could suggest additional criteria. RESULTS: Experts working in national (public) health agencies and statistical offices, as well as in health policy and care agreed on 29 criteria which constitute the Health Information (HI)-Impact Index. The criteria cover four essential domains of evaluation: the production of high-quality evidence, broad access and dissemination, stakeholder engagement and knowledge integration across sectors and in civil society. The HI-Impact Index was pretested by officials working in ministries of health and public health agencies in eight countries; they found the tool acceptable and user-friendly. CONCLUSIONS: The HI-Impact Index provides benchmarks to monitor KT so that countries can assess whether high-quality evidence can be easily accessed and used by the relevant stakeholders in health policy and practice, by civil society and across sectors. Next steps include further refining the procedure for conducting the assessment in routine, and sharing experiences from HIS evaluations using the HI-Impact Index.

How can we monitor the impact of national health information systems? Results from a scoping review.

BACKGROUND: National health information (HI) systems provide data on population health, the determinants of health and health system performance within countries. The evaluation of these systems has traditionally focused on statistical practices and procedures, and not on data use or reuse for policy and practice. This limits the capacity to assess the impact of HI systems on healthcare provision, management and policy-making. On the other hand, the field of Knowledge Translation (KT) has developed frameworks to guide evidence into practice. METHODS: A scoping review of the KT literature to identify the essential mechanisms and determinants of KT that could help monitor the impact of HI systems. RESULTS: We examined 79 publications and we identified over 100 different KT frameworks but none of these were focused on HI systems per se. There were specific recommendations on disseminating evidence to stakeholders at the institutional and organizational level, and on sustaining the use of evidence in practice and the broader community setting. CONCLUSIONS: We developed a new model, the HI-Impact framework, in which four domains are essential for mapping the impact of national HI systems: (i) HI Evidence Quality, (ii) HI System Responsiveness, (iii) Stakeholder Engagement and (iv) Knowledge Integration. A comprehensive impact assessment of HI systems requires addressing the use of HI in public health decision-making, health service delivery and in other sectors which might have not been considered previously. Monitoring Stakeholder Engagement and Knowledge Integration certifies that the use of HI in all policies is an explicit point of assessment.

Quantifying the burden of stillbirths before 28 weeks of completed gestational age in high-income countries: a population-based study of 19 European countries.

BACKGROUND: International comparisons of stillbirth allow assessment of variations in clinical practice to reduce mortality. Currently, such comparisons include only stillbirths from 28 or more completed weeks of gestational age, which underestimates the true burden of stillbirth. With increased registration of early stillbirths in high-income countries, we assessed the reliability of including stillbirths before 28 completed weeks in such comparisons. METHODS: In this population-based study, we used national cohort data from 19 European countries participating in the Euro-Peristat project on livebirths and stillbirths from 22 completed weeks of gestation in 2004, 2010, and 2015. We excluded countries without national data for stillbirths by gestational age in these periods, or where data available were not comparable between 2004 and 2015. We also excluded those countries with fewer than 10 000 births per year because the proportion of stillbirths at 22 weeks to less than 28 weeks of gestation is small. We calculated pooled stillbirth rates using a random-effects model and changes in rates between 2004 and 2015 using risk ratios (RR) by gestational age and country. FINDINGS: Stillbirths at 22 weeks to less than 28 weeks of gestation accounted for 32% of all stillbirths in 2015. The pooled stillbirth rate at 24 weeks to less than 28 weeks declined from 0·97 to 0·70 per 1000 births from 2004 to 2015, a reduction of 25% (RR 0·75, 95% CI 0·65-0·85). The pooled stillbirth rate at 22 weeks to less than 24 weeks of gestation in 2015 was 0·53 per 1000 births and did not significantly changed over time (RR 0·97, 95% CI 0·80-1·16) although changes varied widely between countries (RRs 0·62-2·09). Wide variation in the percentage of all births occurring at 22 weeks to less than 24 weeks of gestation suggest international differences in ascertainment. INTERPRETATION: Present definitions used for international comparisons exclude a third of stillbirths. International consistency of reporting stillbirths at 24 weeks to less than 28 weeks suggests these deaths should be included in routinely reported comparisons. This addition would have a major impact, acknowledging the burden of perinatal death to families, and making international assessments more informative for clinical practice and policy. Ascertainment of fetal deaths at 22 weeks to less than 24 weeks should be stabilised so that all stillbirths from 22 completed weeks of gestation onwards can be reliably compared. FUNDING: EU Union under the framework of the Health Programme and the Bridge Health Project.

What contributes to disparities in the preterm birth rate in European countries?

PURPOSE OF REVIEW: In countries with comparable levels of development and healthcare systems, preterm birth rates vary markedly--a range from 5 to 10% among live births in Europe. This review seeks to identify the most likely sources of heterogeneity in preterm birth rates, which could explain differences between European countries. RECENT FINDINGS: Multiple risk factors impact on preterm birth. Recent studies reported on measurement issues, population characteristics, reproductive health policies as well as medical practices, including those related to subfertility treatments and indicated deliveries, which affect preterm birth rates and trends in high-income countries. We showed wide variation in population characteristics, including multiple pregnancies, maternal age, BMI, smoking, and percentage of migrants in European countries. SUMMARY: Many potentially modifiable population factors (BMI, smoking, and environmental exposures) as well as health system factors (practices related to indicated preterm deliveries) play a role in determining preterm birth risk. More knowledge about how these factors contribute to low and stable preterm birth rates in some countries is needed for shaping future policy. It is also important to clarify the potential contribution of artifactual differences owing to measurement.