Participation and Citizen Science

ZonMw encourages participation and Citizen Science (which together make up one of the four pillars of Open Science) in all its programmes and projects. Citizen Science involves people who are not employed as researchers at institutions that engage in scientific research and knowledge development. They can be patients, but also their family or loved ones, informal carers, healthcare providers or other people who are interested in participating. These people are often able to contribute highly relevant and important knowledge and experience, which can have a significant impact on the quality and relevance of research. Cooperation between citizens and researchers can be initiated by either side.

The benefits of Citizen Science

Interaction and genuine engagement are crucial in Citizen Science, as they ensure that everyone benefits from the research: citizens, scientists and, ultimately, society as a whole. Citizens can engage scientific researchers to help them increase their knowledge or find solutions to challenges they face. An additional benefit is that they learn more about the process of conducting research and are introduced to scientific methods.

For scientists, it is useful to collaborate with the people they aim to help through their research, and it gives them an opportunity to hone their communication skills. The knowledge and perspectives provided by citizens also lead to new insights. Meanwhile, society benefits from Citizen Science because it facilitates more effective and better-informed decisions. As a result, the knowledge we develop is better aligned with real-world needs.

Want to learn more about the role of Citizen Science in health research? Then check out our e-learning module (available in Dutch). 

At ZonMw, participation refers to collaboration between researchers and stakeholders, such as experts by experience, patients, relatives and informal carers, as well as healthcare providers and other interested parties. Working together with relevant stakeholders helps advance research, development and innovation projects within the healthcare sector by giving researchers a better understanding of how the solutions they develop might be used in practice. This leads to more tangible results for everyone: scientists, professionals and experts by experience.

ZonMw offers grants for scientific research on the causes of disorders, but also for studies that will eventually lead to the development of new treatments and medicines, as well as ones that focus on improving care and support for people with illnesses and disabilities. We also award grants to fund practical projects that give people more control over different aspects of their lives. All the work we fund requires some form of cooperation with the people concerned, and sometimes they themselves are the ones applying for a grant.

The results of participation

Examples of the results of participation in research include rheumatoid arthritis patients putting fatigue on the research agenda, patients co-writing a guideline for people dealing with reduced fertility, and a Wikipedia page created by parents that led to research being conducted to identify the cause of their son’s rare disease.

Participation has also produced products that are used in care and patients’ daily lives. These include a toolbox that gives teachers the information they need to help children with chronic illnesses go to school carefree, as well as a method that increases the sense of social support elderly people with dementia experience. Through this kind of participation, we facilitate medical research as well as studies within the social domain.

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No set recipe

Thanks to its success, participation is becoming more and more common. Even so, there is no set recipe yet for effective participation. That is why every project and study needs to have enough room to accommodate a process of trial and error, and all stakeholders should work together as equal partners to facilitate this, throughout the entire process.

You do not have to be a scientist to apply for a grant to fund a study or project – citizens can do so as well. Participation also plays an important role in the assessment of grant applications. One thing we look at, for instance, is whether all relevant stakeholders, such as experts by experience, are involved. Stakeholders are crucial in the assessment process itself as well, as they can help determine the extent to which projects match their needs. They also make sure that any experts by experience involved are not overburdened by their participation.

If you are applying for a grant, you can use ZonMw’s assessment criteria below to prepare your application.

Before you get started: fleshing out your idea

• Does the idea respond to a societal need?
• Which target groups gave you the idea? How did it originate?
• Is the idea societally embedded? 
• How have experts by experience or other stakeholders helped you explore this topic?

Start: translating your idea into a study or project

• What do you want the project to achieve? Who will it benefit? What problem does it solve?
• Explain how your project is relevant to your target group. What specific condition, treatment or target group will your project focus on? What do you think the result of your project will be? And how much time will you need to deliver this result? Will your research benefit your target group’s social participation? Will it improve their quality of life or care? 
• Which target groups contributed to the design of the research or project? Did they help you formulate or hone your research question? How did they do so?
• To what extent did stakeholders participate in setting research priorities, for instance through field consultations and advice?

The application

• Did stakeholders participate in drafting the application?
• What was their role in this?
• Was the application initiated by one of the target groups involved? Did any other parties contribute to the application process?

Implementation

• Is the plan feasible? Is the burden on participants acceptable? Are the risks to participants clearly defined?
• How will you create room for participation in the project? Are experts by experience and other stakeholders sufficiently involved at each stage of the study? Does the study take diversity and representation into account? Which methods will be used at various stages of the research? Is cooperation with relevant parties sufficiently budgeted for?

After completion

• Joint publication of results by the researcher(s) and stakeholders.
• Inform the public and promote the results through the stakeholders’ channels.