Periodic Reporting for period 2 - SYNCHROS (SYNergies for Cohorts in Health: integrating the ROle of all Stakeholders)
Période du rapport: 2020-07-01 au 2022-06-30
SYNCHROS (SYNergies for Cohorts in Health: integrating the ROle of all Stakeholders) coordination and support action aims to establish a sustainable European strategy for the development of the next generation of integrated population, patient and clinical trial cohorts, thereby contributing to an international strategic agenda for enhanced coordination of cohorts globally. This will address the practical, ethical and legal, and the methodological challenge to optimising the exploitation of current and future cohort data, towards the development of stratified and personalised medicine as well as facilitating health policy. In order to achieve this objective, SYNCHROS will map the cohort landscape in Europe and large international initiatives, identify the best methods for integrating cohort data, identify solutions for addressing practical, ethical and legal challenges in integrating data across patient, clinical trial and population cohorts, and evaluate the use of emerging and new data collection technologies and types of data.
Together with intensive stakeholder involvement (researchers, patients, funding bodies, clinicians, coordinators of previous harmonization and integration exercises), strategy briefs will be written and used to conduct stakeholder dialogues to generate consensus following a deliberative process and implementation science methods. We aim to make sustainable recommendations on standards to improve future sample, data collection and data sharing methods and disseminate this information so as to contribute to defining an international strategic agenda for better coordination of cohorts globally. SYNCHROS partners include a large range of expertise from epidemiology and clinical research to legal/ethical issues and anthropology, international organizations such as WHO and European infrastructures such as ECRIN.
Together with intensive stakeholder involvement (researchers, patients, funding bodies, clinicians, coordinators of previous harmonization and integration exercises), strategy briefs will be written and used to conduct stakeholder dialogues to generate consensus following a deliberative process and implementation science methods. We aim to make sustainable recommendations on standards to improve future sample, data collection and data sharing methods and disseminate this information so as to contribute to defining an international strategic agenda for better coordination of cohorts globally. SYNCHROS partners include a large range of expertise from epidemiology and clinical research to legal/ethical issues and anthropology, international organizations such as WHO and European infrastructures such as ECRIN.
SYNCHROS explored the impact of health data changes on cohort research. Stakeholders in the disciplines of legal studies, big data analytics, clinical research, epidemiological studies, research infrastructures and ethics have contributed to the creation of a sustainable strategy for optimising the exploitation of health-related cohort data in Europe and beyond. We described the practical implementation of such strategy, best practices and solutions and give fresh insights into four aspects of health-related cohort data - methodological, legal, technological and ethical. Specifically, we set out the methodological strategies and analytical methods for harmonising and integrating cohort data, the ethical and legal considerations for collecting, processing, accessing and sharing data in the health-research domain, and the implications of emerging and new data collection technologies for cohort studies. The strategic agenda for enhanced international coordination and collaboration of cohorts includes concrete tasks and sustainable recommendations for the development of the next generation of integrated population, patient and clinical trial cohorts. Key findings have been disseminated to a wider (scientific) audience through diverse channels e.g. website, newsletters, social media.
SYNCHROS identified more than 130 European/international initiatives that integrated cohort data from either population, patient and/or clinical trial studies. The information gathered through this inventory has been made publicly available in the SYNCHROS repository. The repository has been created as a solid tool to promote the re-use of cohort data and to facilitate future cooperation among cohort studies and/or initiatives. Future harmonisation initiatives can profit from the overview of the state-of-the-art harmonisation strategies and analytical methods, their practicalities, limitations and challenges, which are complemented with theoretical scenarios to provide guidance on the options and processes that need consideration when harmonising cohort data. Apart from the scientific impact of these products, an economic impact can be envisaged. Cohort studies as well as harmonisation exercises are expensive and time-consuming, by providing key information and facilitating well-informed choices unnecessary delays and common mistakes can be avoided. Moreover, both products (plus a sustainable strategy) advice funders in terms of efficiency and return on investment of future cohort studies. A societal impact is more expected from the legal and ethical open issues that were identified. Apart from the rapid pace in the development of new technologies for data collection, and thus the problem of keeping up in terms of regulations to protect users and patients, there are also some clear open issues for cohort data harmonisation when it comes to the GDPR and FAIR principles. As the real impact of the project largely depends on the uptake by the stakeholder community, SYNCHROS has actively disseminated its findings in the form of scientific publications, and a final conference and book on the topic "Optimising Cohort Data in Europe".