PATIENT ADVISORY BOARD (PAB)

HISTORY

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 9 parents and an International Patient Advisory Board consisting of 4 parents. 


THE RSV Patient Network has 3 important pillars:

AWARENESS CREATION
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​Creating awareness about the RS virus as the RS virus is still a very unknown virus in society.

PATIENT PERSPECTIVE IN RSV RESEARCH

We find parent's perspective valuable information to incoperate within scientific research.

ENLARGING OUR NETWORK


Expanding and strengthening our networks to more countries​.

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AWARENESS CREATION
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We are currently active on Facebook (RS-virus patientennetwerk), Instagram (@rsvpatientnetwork), Twitter (@rsvpatients) and LinkedIn (RSV Bronchiolitis Patient Network).

We have a closed Facebook group in both English and Dutch. Personal experiences can be shared here.

To raise awareness, we post information about the RS virus throughout the year in the form of interviews with professionals, stories from parents and other interactive messages.

Every year we organize an Awareness Week in which we post a lot of content on all our channels, including the international channels.

In 2021 the Awareness Week took place from 8 to 12 November with the theme: Attention to prevention. This is in line with the COVID measures that can protect infectious diseases (such as the RS virus). With this theme we wanted to show that conscious and hygienic choices can lead to a reduced risk of RSV in children.

​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
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​First of all, we fulfill the advisory function towards the research group.

For example, we review information letters that researchers have prepared for parents of RS 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 RS patients, endorse the importance of an investigation.
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In November 2021, a European study, PROMISE (Promise – Preparing for RSV Immunization and Surveillance in Europe (imi-promise.eu), was started in which the Patient Advisory Board has been given an important role.

​ENLARGING OUR NETWORK

Lastly, we are focused on strengthening our network.

Ideally, we would like to find parents 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, we involved in making connections with other relevant organizations in the Netherlands and Europe. These organizations 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.

We have posters, flyers, fact sheets about the RS virus. These can be downloaded from our website.

Soon we will add a power point presentation, which can be used for training purposes.

​If you have any questions about our network, if you want more information or if you want to help in our network, you can send an email to: rsvpatientnetwork@resvinet.org.