the same rights as the other stakeholders in a project. This kind of involvement is only possible when specific structures are created in which parents have access to compensation, knowledge, experience, and training that enable their engagement and commitment. european foundthe care of newPowered by 9 2.2. Transparency and legitimacy Start by defining clear expectations and goals for the collaboration from both sides. Be transparent and honest about the potential impact their input can have and in case feedback may be required. Involve parent representatives from the beginning, and already in the thinking process. Let parent representatives form an equal partner in all topics. Allow prior discussion of critical ethical situations for the project and acknowledge the importance of their involvement. Be aware that parents might miss information shared on conferences or “corridor meetings” by professionals and try to find a way to compensate this lack of information. When parents feel supported they are more motivated to actively participate and contribute over a longer period. The information given to parent representatives should be complete and balanced about positive and negative aspects of the research project. Given that many parents engage in their organisation as volunteers (in addition to their work and family), it is important to clearly state expectations at the outset. To ensure that expectations can be met, a project should be formally presented to potential partners, with a lay overview and comprehensive, relevant information (e.g. objectives, stakeholders, milestones, planned activities, including time and travel commitment). The information needs to be given with sufficient notice (about six weeks) to allow the parent representatives to come to an unpressured decision whether or not to collaborate in a specific project. A template may provide helpful structure to the initial project information, so that parent representatives can gain a rapid and comprehensive insight into the main project components without having to read the often extensive and very technical project documents. A role description and information about training, payment, mentoring, or other resources will help the parent organisation to judge the feasibility of their involvement. A non-disclosure-agreement between the parties involved maintains project details’ confidentiality from the outset. During a project, partners should publically disclose their collaboration through e.g. their websites or in annual reports. european foundation for the care of newborn infants Powered by 10 Involving parent representatives in a project also sets an example for parents directly involved in the study: they are more likely to have trust in the set-up and conduct of the study, because they might feel that the project has been checked and found worthy and of good quality by parent representatives. 2.3. Independency The independency of parent representatives in the project should be respected and they must be free to refuse participation without fear of negative consequences. In case of a negative answer to a participation request, or in case the parental view conflicts with the researcher’s view at some point of the project, parents should not be pressured to change their mind (e.g. by increased contacts or frequent phone calls, emotional arguments, or by utilising the parents’ lack of expertise). All interactions with parents should take place in a professional manner. Where available, codes of conduct should be the basis of a partnership. „When being involved in a research project, it is very important to know exactly what is expected from us. We have to plan our resources and therefore need to know all the milestones, the amount of travelling that will come up and the time we need to spend on a project. Since we are primarily parents and no researchers, the information we get needs to be in lay language so that we can optimally assess it. Only with full transparency in advance we can make sure that we can support the project in the best possible way.“ „ Silke Mader, Chairwoman of the EFCNI Executive Board european foundthe care of newPowered by 11 2.4. Capacity building - Training of parents and professionals In order to be able to contribute to a project throughout the entire process, to better collaborate as partner, and to communicate their ideas more clearly, parents acting as representatives in research projects need to gain a firm understanding of research, as well as its potentials and limitations. They should acquire a certain scientific knowledge, learn the academic and medical jargon, know how to read and interpret studies, or how to write grant applications, reports or lay summaries. At the same time, the parents need to develop their communication skills to represent themselves and the children’s best interests successfully. They will need to gain confidence with regard to voicing opinions in group meetings with experts or researchers, and feel comfortable with public speaking to interact with professionals, policy makers, media, etc. Researchers (research community) need to proactively support this learning process, e.g. by fostering the capacity building of umbrella organisations, supporting the cascading of information, and training in form of peer-to-peer support. In parallel, (co-)researchers should receive training to change their way of thinking when it comes to patient perspective and the value of including parents in research in general, and more specifically during the different phases of a project, and how and where in the process parents can be involved. Research collaboration with parents requires a different way of communication throughout the project, a clear and simple language, a much more sensitive and empathetic wording, and eventually a structure to support parents to cope with possible “flash backs”, or any negative outcomes for their own child. Besides continuous networking between organisations and individuals, workshops in collaboration with parent representatives at the beginning of an interaction, workshops or sessions on scientific congresses or conferences, building respective content into training curricula,