Why should you involve clients or family in clinical research?


Karen van Meeteren

Karen M. van Meeteren BSc has had her formal education in biochemistry and in science education and communication. Her informal education she got from her daughter who has severe cerebral palsy. Since 2015 she combines both forms of education in a multitude of projects circling around the topic of patient involvement in research.

Examples of projects are:

Why & how should you involve clients or family in clinical research?

The awareness of the importance of involving the target audience of projects ín projects itself is growing over the past years. In this active workshop we work on why we want to involve patients in our research projects, what the barriers are and how to overcome them.

Video recorded during the Pisa Summer School on July 15, 2019

More lectures from Pisa Summer School http://edu.eacd.org/Pisa-summer-school

Relevant references and links

Klem, M. & Meeteren, K.M. van (2018) Parental involvement: a critical reflection In: Alsem M.W., Family needs and the role of information in pediatric rehabilitation care. PhD-thesis UMC Utrecht, Brain Center Rudolf Magnus, 2018, pp 199-215

Involvement matrix, tool for researchers and experienced experts to talk about involvement in projects https://www.kcrutrecht.nl/involvement-matrix/

Smits, D., van Meeteren, K., Klem, M. et al. Designing a tool to support patient and public involvement in research projects: the Involvement Matrix. Res Involv Engagem 6, 30 (2020). https://doi.org/10.1186/s40900-020-00188-4

Family Engagement in Research Course (McMaster University), course for researchers ánd parents to learn about patient involvement in research https://www.canchild.ca/en/research-in-practice/family-engagement-in-re…

Alsem, M.W., van Meeteren, K.M., Verhoef, M. et al. Co-creation of a digital tool for the empowerment of parents of children with physical disabilities. Res Involv Engagem 3, 26 (2017). https://doi.org/10.1186/s40900-017-0079-6

Alsem MW, Verhoef M, Braakman J, van Meeteren KM, Siebes RC, Jongmans MJ, Visser-Meily JMA, Ketelaar M; WWW, roadmap study group. Parental empowerment in paediatric rehabilitation: Exploring the role of a digital tool to help parents prepare for consultation with a physician. Child Care Health Dev. 2019 Sep;45(5):623-636. doi: 10.1111/cch.12700. Epub 2019 Jul 16. PMID: 31276605; PMCID: PMC7171983.