JoinUs4Health Deliverable 7.3: Final monitoring and evaluation (M&E) report
Creators: name: Schauer, Birgit
name: Terzikhan, Natalie
name: Licher, Silvan
name: Sowa, Pawel
name: Dieckmann, Hannes
name: Troschke, Tabea
name: Winter, Benjamin
name: Kiszkiel, Lukasz
Publisher: name: Zenodo
Year: 2024

description: Funding programme: Between 01/21 and 12/2023, the project “Join Us to Optimize Health Through Cohort Research” (JoinUs4Health) received funding under the European Union’s Horizon 2020 research and innovation programme (grant agreement number 101006518). The related call (SwafS-23) stated that ‘consortia are expected to implement institutional changes to promote associations’ engagement in science, and that these institutional changes are sustainable beyond the lifetime of the project funding period’. 

Background: Three of the eleven partners are medical universities implementing population-based cohort studies in their local study regions in Bialystok, Poland (Bialystok PLUS since 2018; Medical University Bialystok), Rotterdam, The Netherlands (Rotterdam Study since 1989; Erasmus Medical Center) and Mecklenburg-Pomerania, Germany (Study of Health in Pomerania [SHIP] since 1997; University Medicine Greifswald). Together these cohorts have produced in-depth databases for up to three decades. These data are used extensively for scientific research, but benefits are not very tangible to local populations.Project overview: In JoinUs4Health, we aimed to combine Responsible Research and Innovation (RRI) and crowdsourcing as converging approaches to promote inclusive innovation and citizen engagement in cohort research via the implementation of at least six institutional changes. More reflections on the work done can be found in Deliverable (D) 7.5. We developed on line crowdsourcing platform that allows anybody from the age of 16 to submit suggestions, vote or comment on others’ contributions or contribute to topics via tasks or teams. Community building is ongoing through on- and offline activities. EMC focussed on formal and informal education to promote RRI achieving valuable expected (e.g. summer school, Minor programme for bachelor students) and forthcoming outcomes (at an institutional level, e.g. fundamental revision of existing medical curricula, and departmental level, including a new RRI research line).Methods: As part of monitoring, we applied two questionnaires (feedback on the platform; awareness, use and perception of JoinUs4Health amongst SHIP-NEXT participants). In SHIP, we compared cohort response between an intervention group receiving information on JoinUs4Health (n = 4,212) and a control group (n = 1,503) between 05/2022 and 11/2023. Furthermore, we analysed user statistics for the website and platform. As part of evaluation, we applied the NEOH evaluation framework (Network for Evaluation of One Health) and the MICS impact evaluation tool. We carried out two systems thinking workshop to develop a systems map and develop the Theory of Change. Structure of this report: The aim of this report is to reflect on the value and lessons learnt of the project as a whole as well as individual activities. After a short introduction, we outline the project assumptions (Section 3) and describe applied methods (Section 0). In Section 5, we present results from monitoring activities. Sections 6 to 8 summarize and reflect on outputs from the NEOH evaluation framework. Section 9 provides a summary per Work Package (WP), whilst Section 10 considers societal, democratic, economic, scientific, and environmental impacts. Subsequently, we connect results with selected MoRRI indicators and Sustainable Development goals in Section 11 and discuss aspects related to sustainability (Section 12). The overall discussion (Section 13) revisits assumptions, interprets results in the light of RRI key and process dimensions and summarizes lessons learnt.

Conclusions: The three-year funding period allowed us to design and develop a crowdsourcing methodology and platform. Efforts to build an active (online) community to support the crowdsourcing concept are ongoing. Thus, the project can be considered to be still in the early implementation phase. Although cohort institutions will continue to promote the concept and platform, funding will need to be sourced to provide additional resources (staff, IT resources, mobilization activities) to be able to promote the concept effectively in the region.