Periodic Reporting for period 2 - JoinUs4Health (Join Us to Optimize Health Through Cohort Research)
Okres sprawozdawczy: 2022-07-01 do 2023-12-31
Research and innovation must become open and responsible towards society in order to contribute to a healthy, sustainable, and just society. This means, involving the voices, perspectives, values and concerns of citizens and societal stakeholders as an intrinsic part of research methodologies. JoinUs4Health has taken up this challenge for a research area of decisive importance for society, namely cohort research: the longitudinal assessment of factors that determine the health of citizens. JoinUs4Health aims to combine Responsible Research and Innovation (RRI) and crowdsourcing as converging approaches to promote inclusive innovation and citizen engagement using three cohort institutions as living laboratories. Our ambition is to engage cohort participants, citizens and other groups of societal actors (i.e. policy makers, business/industry, non-governmental organisations, education community) in a co-creative manner, so as to make cohort research more sensitive to societal expectations and concerns and to promote access to science, especially in the field of health and life sciences.
Six institutional changes are being implemented at three institutions in Germany (Study of Health in Pomerania since 1997), the Netherlands (Rotterdam Study since 1989) and Poland (Bialystok Plus since 2019). We hypothesize that the proposed approach can increase citizens’ science skills, as well as their understanding of, interest in and trust in science, thus being able to break the glass wall between the general public and scientists, and to increase society’s readiness to see science as an investment in the future.
The project objectives were to
1. ESTABLISH and REVIEW a conceptual framework
2. DEVELOP, TEST and APPLY technology to facilitate engaging various actors as part of cohort research
3. EXPLORE, IMPLEMENT and MONITOR institutional changes and incorporate RRI into the governance framework of three institutions conducting cohort studies
4. ADVANCE RRI and citizen science into the mainstream of public engagement, science communication and education
5. PROMOTE engagement and COMMUNICATE and DISSEMINATE outputs via traditional and innovative means
The geographical link to the cohort regions and semi-open access to in-depth cohort data provides tremendous potential to combine local scientific and societal knowledge to work on integrated health approaches tailored to local settings. Currently, it is still too early to see a measurable impact, e.g. in terms of a more scientifically interested and literate society. The institutional changes are however showing first effects and will be sustained beyond the project period. The final evaluation report (Deliverable 7.3) provides an overview of the project's initial assumptions, its context and the results from the application of two evaluation frameworks, the NEOH evaluation framework (https://neoh.onehealthglobal.net/(odnośnik otworzy się w nowym oknie)) and the MICS evaluation tool (https://mics.tools/projects/joinus4health(odnośnik otworzy się w nowym oknie)).
Six institutional changes are being implemented at three institutions in Germany (Study of Health in Pomerania since 1997), the Netherlands (Rotterdam Study since 1989) and Poland (Bialystok Plus since 2019). We hypothesize that the proposed approach can increase citizens’ science skills, as well as their understanding of, interest in and trust in science, thus being able to break the glass wall between the general public and scientists, and to increase society’s readiness to see science as an investment in the future.
The project objectives were to
1. ESTABLISH and REVIEW a conceptual framework
2. DEVELOP, TEST and APPLY technology to facilitate engaging various actors as part of cohort research
3. EXPLORE, IMPLEMENT and MONITOR institutional changes and incorporate RRI into the governance framework of three institutions conducting cohort studies
4. ADVANCE RRI and citizen science into the mainstream of public engagement, science communication and education
5. PROMOTE engagement and COMMUNICATE and DISSEMINATE outputs via traditional and innovative means
The geographical link to the cohort regions and semi-open access to in-depth cohort data provides tremendous potential to combine local scientific and societal knowledge to work on integrated health approaches tailored to local settings. Currently, it is still too early to see a measurable impact, e.g. in terms of a more scientifically interested and literate society. The institutional changes are however showing first effects and will be sustained beyond the project period. The final evaluation report (Deliverable 7.3) provides an overview of the project's initial assumptions, its context and the results from the application of two evaluation frameworks, the NEOH evaluation framework (https://neoh.onehealthglobal.net/(odnośnik otworzy się w nowym oknie)) and the MICS evaluation tool (https://mics.tools/projects/joinus4health(odnośnik otworzy się w nowym oknie)).
Under Objective 1, we have refined the methodological framework (see Deliverable 2.2) strengthened RRI thinking within the consortium and reflected on factors affecting engagement of citizens and uptake of RRI (Deliverable 2.3). A website (https://joinus4health.eu(odnośnik otworzy się w nowym oknie)) and an online platform (https://platform.joinus4health.eu(odnośnik otworzy się w nowym oknie)) were launched and are accessible in four languages (objective 2). The platform allows anyone from the age of 16 years to submit questions, vote or comment on contributions of others and work on tasks or in teams and is now also available as a mobile version. We developed a catalogue of 29 institutional changes and obtained feedback from each of the cohorts (objective 3). Each of the six categories of institutional changes has been initiated in at least one of the cohorts. Initiatives and progress vary between cohort regions (see Deliverable 4.3). A new 10-week educational programme (objective 4) has been established at the Erasmus Medical Centre, Rotterdam (https://youtu.be/do9hpQL-U_Q(odnośnik otworzy się w nowym oknie)). Based on our Communication and Dissemination Strategy, we have provided regular updates via our social media channels on platform activities, institutional changes and health communications (see Deliverables 6.7). We have prepared two extra deliverables (denoted Deliverables 7.4 and 7.5) which summarize our experiences as consortium and our experiences with citizen science. Deliverables are available on our project website.
Our pioneer project contributes fostering the active participation of citizens in research, not merely as data providers, but by using their experiences, questions and values to improve the quality and relevance of research. This has the potential to strengthen the trust in and uptake of cohort studies results and empower citizens to take co-responsibility for their health, preparing the ground for future projects and initiatives. Cohort representatives shared their perspectives during the “Towards comprehensive population studies II Conference” in Bialystok on 12/2023 (see https://conference.bialystok.plus/(odnośnik otworzy się w nowym oknie) for conference recordings).
Our online platform provides structures and processes to allow greater involvement of all stakeholders in RRI and cohort research. The platform infrastructure is open source (https://github.com/JoinUs4Health(odnośnik otworzy się w nowym oknie)).
Two editions of the 10-week Minor programme “From Science to Society” resulted in higher than expected impact. This minor programme developed by the Erasmus Medical Centre (Erasmus MC) provides an important step towards anchoring RRI in education. In its second year of implementation (2023), the course facilitators were rewarded the EUR Open and Responsible Science award.
Project representatives played a significant role in the complete revision of the Erasmus MC medical curriculum, fuelled by our experience in the JoinUs4Health consortium.
In Poland, we increased public engagement in the research process through various outreach activities. The JoinUs4Health brand has become better known in Bialystok in recent months (especially among high school students), which is a great investment for future initiatives.
Our online platform provides structures and processes to allow greater involvement of all stakeholders in RRI and cohort research. The platform infrastructure is open source (https://github.com/JoinUs4Health(odnośnik otworzy się w nowym oknie)).
Two editions of the 10-week Minor programme “From Science to Society” resulted in higher than expected impact. This minor programme developed by the Erasmus Medical Centre (Erasmus MC) provides an important step towards anchoring RRI in education. In its second year of implementation (2023), the course facilitators were rewarded the EUR Open and Responsible Science award.
Project representatives played a significant role in the complete revision of the Erasmus MC medical curriculum, fuelled by our experience in the JoinUs4Health consortium.
In Poland, we increased public engagement in the research process through various outreach activities. The JoinUs4Health brand has become better known in Bialystok in recent months (especially among high school students), which is a great investment for future initiatives.