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PATIENTENFEDERATIE NEDERLAND

Country: Netherlands

PATIENTENFEDERATIE NEDERLAND

1 Projects, page 1 of 1
  • Funder: European Commission Project Code: 101006518
    Overall Budget: 1,588,540 EURFunder Contribution: 1,588,540 EUR

    Prospective cohort studies allow tackling major research questions regarding health and well-being of individuals and communities. JoinUs4Health aims to combine Responsible Research and Innovation (RRI) and crowdsourcing as converging approaches to promote inclusive innovation and citizen engagement in cohort research. Objectives are: 1) ESTABLISH and REVIEW a conceptual framework; 2) DEVELOP, TEST and APPLY technology to engage various societal actors; 3) EXPLORE, IMPLEMENT and MONITOR institutional changes and incorporate RRI into the governance framework of three cohort institutions; 4) ADVANCE RRI and citizen science into the mainstream of public engagement, science communication and education; and 5) PROMOTE engagement and COMMUNICATE and DISSEMINATE outputs via traditional and innovative means. The concept is based on crowdsourcing, where cohort participants, the general public and other societal actors can propose research questions or contribute to addressing such questions via working groups. Researchers are encouraged to actively engage citizens and other societal actors in dialogues during the design of their analyses and interpretation of results. Specialists will enhance this synergy by online and offline activities based on the communication strategy to boost engagement and ensure sustainability. An interactive, web-based platform facilitates and social media promotes engagement, communication and dissemination. Targeted education activities are designed and implemented at the school, university and citizen level. Six institutional changes provide the required conditions targeting the areas engagement, open access, communication and dissemination, management, implementation of RRI at cohort institutions, and education. Their implementation will be mentored by an RRI experienced partner and an international RRI advisory panel. It is hypothesized that this approach also counteracts the trend of decreasing participation in cohort studies.

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