RSV is the leading cause of hospitalization in infants
The RS virus is one of the leading causes of respiratory infections in young children. It leads to many hospital and ICU admissions every year. Involving patients in scientific research on the RS virus is of great importance to improve the quality and relevance of the research, the advisory board of RSV patients argues in a new scientific publication in The Journal of Infectious Diseases.
RSV is the leading cause of hospitalization in infants. Estimates from 2015 indicate that there are approximately 33.1 million lower respiratory tract infections associated with RSV worldwide. These infections lead to approximately 3.2 million hospitalizations in children under the age of five. In addition, RSV leads to a considerable burden of disease in the elderly and adults with a weakened immune system.
At the UMC Utrecht, large-scale research is being conducted into RSV. This involves not only doctors, researchers and students, but also patients, who are represented in the RSV Patient Advisory Board (PAB). This is an advisory board consisting of parents of children who have experienced a serious RSV infection. Together with the research group of Louis Bont (UMC Utrecht), they draw attention to the importance of patient participation in scientific research.
Added value
“We have learned from the experiences of the RSV research group at UMC Utrecht what the added value, success factors and barriers are when involving patients in scientific research”, says researcher Corline Parmentier, who, together with Nicole Derksen-Lazet (former chair of the PAB) wrote the article. “First of all, patients and their representatives can point researchers to the research questions that are most important to them. Previous research has shown that this can differ greatly from what scientists consider important. In addition, patient representatives have a unique input in terms of the relevance and feasibility of research, for example advising on what can or cannot be asked of study participants. They can also educate the public about research results. They do this by combining their scientific knowledge with their personal experiences.” Also, according to the authors, involving patients can lead to more confidence of patients and parents in the research results, which is especially important with a view to a future vaccine against the RS virus.
The Advisory Board (PAB) was established in 2013 and has played an increasingly important role in scientific research into RSV ever since. Initially, they were mainly locally involved in the RSV research group in Utrecht. There they advised, among other things, on the feasibility of research proposals and they co-wrote grant applications. In 2016, the work of the PAB was expanded to a European level, thanks to the start of RESCEU – a major European research project on RSV. For example, patient participation in RSV research came to international attention. In the follow-up project, PROMISE, the Patient Advisory Board will play an important role in identifying and optimizing vaccine readiness among parents, as several vaccine candidates are currently under development.
Barriers
Despite the good experiences with patient involvement in RSV research, increasing patient participation in RSV research is not easy. “There is often a lack of time for both parents and researchers. And while some patients and their families continue to experience long-term effects from RSV, the transient nature of an acute RSV infection makes patient representatives less likely to remain involved in research for an extended period of time,” the authors said. “That is why it is important that there is flexibility and non-commitment in the collaboration between researchers and patient representatives.”
Structural involvement
The experiences with patient participation in the RSV study in Utrecht demonstrate the importance of structural involvement of patients and their representatives. Their involvement can improve the quality and relevance of scientific research. Parmentier: “The time in which patients are only seen as subjects of study is over. Yet it is generally still the medical and scientific experts who set the research agenda. Patients should also be structurally involved in determining the research agenda.”
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