JMIR Publications

ABSTRACT

Background:

The VACCELERATE Pan-European Scientific network aims to strengthen the foundation of vaccine trial research across Europe by following the principles of equity, inclusion, and diversity. The VACCELERATE Volunteer Registry network provides access to vaccine trial sites across the European region and supports a sustainable volunteer platform for identifying potential participants for forthcoming vaccine clinical research.

Objective:

The aim of the present study was to approach members of patient advocacy groups (PAG) across Europe to assess their willingness on registering for the VACCELERATE Volunteer Registry, and their perspectives related to participating in vaccine trials.

Methods:

In an effort to understand how to increase recruitment for the VACCELERATE Volunteer Registry a standardised survey was developed in English and was translated into 8 different languages (Dutch, English, French, German, Greek, Italian, Spanish and Swedish) by the respective National Coordinator (NC) team. The online anonymous survey was circulated, from March to May 2022, to PAG across ten European countries (Belgium, Cyprus, Denmark, France, Germany, Greece, Ireland, Italy, Spain, and Sweden) to share with their members. The questionnaire constituted of multiple choice and open-end questions evaluating information regarding participants’ perception on participating in vaccine trials, and their willingness to become involved in the VACCELERATE Volunteer Registry.

Results:

In total, 520 responses were collected and analysed. The PAG members reported that the principal criteria influencing their decision to participate in clinical trials overall are: 1) the risks involved 2) the benefits that will be gained from their potential participation and 3) the quality and quantity of information provided regarding the trial. The survey revealed that out of the 520 respondents, 133 individuals were “positive” towards registering in the VACCELERATE Volunteer Registry, across all age groups, with an additional 47 individuals reporting “very positive”. Respondents from Northern European countries were 1.725 (95% CI 1.206 - 2.468) times more likely to be willing to participate in the VACCELERATE Volunteer Registry compared to Southern European countries, respectively.

Conclusions:

Factors discouraging participants from joining vaccine trial registries and/or clinical trials, include primarily concerns of safety of novel vaccines and lack of trust in those involved in the vaccine development. The present outcomes aid in identifying issues and setbacks in present registries providing the VACCELERATE network with feedback on how to potentially increase participation and enrolment in trials across Europe. Development of European health communication strategies among diverse public communities, especially via patient advocacy groups, is the key for increasing patients’ willingness to participate in clinical studies.