RSV is a major cause of morbidity and mortality among young children, and also causes a substantial disease burden among elderly and high-risk adults. Involving patients in scientific research on RSV is of great importance to improve its quality and relevance. The RSV Patient Advisory Board (PAB) has drawn attention for more patient participation in research in a scientific publication in “The Journal of Infectious Diseases”.
The article is written by Nicole Derksen-Lazet (former chair of the PAB) and Corline Parmentier (member of the PAB support team) in collaboration with pediatric infectious diseases specialists dr. Joanne Wildenbeest and prof. dr. Louis Bont. The story of the RSV PAB, which was established in 2013 as a local advisory group in Utrecht (the Netherlands) and officially became part of the governance structure of RESCEU in 2016, demonstrates the additional values, success factors, and barriers to involve patients in scientific research.
Involvement of the PAB in RSV research has resulted in the establishment of an independent and credible advisory group for researchers, and many activities to improve RSV awareness among professionals and the general public. Nevertheless, there is still room for improvement: patients and their representatives are increasingly reshaping the research agenda, but medical and scientific experts are still the ones who set it. Patients and their representatives are important stakeholders in research, and their involvement should become the rule instead of the exception – as concluded by the authors.
Read the full article here.