In April 2013 the RSV research group of the Wilhelmina Children’s Hospital in Utrecht, the Netherlands, approached parents of children who had experienced a severe RSV infection to become involved as an advising party in their studies.
An initial brainstorm session facilitated an open dialogue between the research group and these parents to exchange experiences and current developments in the field of RSV. Even though overlap existed between the research priorities of professionals and those of patient representatives, parents of RSV patients put new and challenging issues forward. To benefit from this unique source of knowledge, a collaboration with the research team started.
The parents gave advice on grant applications, study proposals and patient information forms. The institution of this group of RSV patient representatives, the Patient Advisory Board (PAB), was the initiation of increasing patient involvement in RSV research. Today there is a Dutch Patient Advisory Board consisting of 8 parents and an International Patient Advisory Board consisting of 7 parents.
The PAB has 3 important pillars
Creating awareness about RSV as this virus is still a very unknown virus in society.
- We are active on social media
- We create webinars for the general public
- We organize the annual Awareness Week (November).
- We inform professionals, like general practitioners (family doctors), midwives, maternity care, consultation agency about RSV.
This academic year (2023), we started giving guest lectures in midwifery training in the Netherlands.
In addition to our social media activities, part of the Dutch network participates in education at UMC Utrecht for medical students. This education revolves around the patient’s perspective in research and medical decisions, where parents and students engage in conversation.
Patient perspective in RSV Research
We find parent’s perspective valuable information to incoperate within scientific research.
We participate in several advisory committees as an independent sounding board for researchers. We represent the patient’s perspective in scientific research and make sure the voice of the patient is heard in a medical scientific setting via constructive dialogue with researchers. We especially work closely with researchers of Wilhelmina Children’s Hospital in Utrecht (www.hetwkz.nl). This hospital has an active RSV research group led by Professor Louis Bont. They are involved in many medical scientific projects studying prevention and treatment of RSV infections and the virus’ burden of disease on society.
For example, we review information letters that researchers have prepared for parents of RSV patients or participants in RSV clinical research. We check whether the information is clear enough for parents and whether the burden is reasonable for the patient. We also provide feedback on research proposals for grant applications. Sometimes we write a support letter, in which we, as parents of RSV patients, endorse the importance of an investigation.
Enlarging our network
Expanding and strengthening our networks to more countries.
Lastly, we are focused on strengthening our network.
Ideally, we would like to find parents and older adults from all European countries and especially in the UK, Germany, France, Spain, and Italy. We would love to establish small working groups in every country to work on the above mentioned efforts as well as create independent patient networks within every country.
Besides finding parents and older adults, we are involved in making connections with other relevant organisations in the Netherlands and Europe. These organisations can also contribute to our message that RSV still receives too little attention in society and they may have the opportunity to bring us into contact with interested parents and older adults.