individual parents might contribute valuable insights into their experiences of a specific condition, service or treatment. Other occasions may require a more general perspective from a parent representative, having the background and feeling confident in representing a large parental group with many different experiences, cultures, or socio-economic backgrounds. european foundation for the care of newborn infants Powered by 6 In both cases, parent organisations are the ideal first points of contact: These organisations often have a large network of affected parents and can help in identifying either individual parents or persons who are able to answer more general questions with a feedback of a bigger voice. With appropriate resources, parent organisations can join the research project with representatives of their own organisation, allowing them at the same time to gain experience and professionalism for future projects. When individual parents are involved in a project, a relevant parent organisation should also be included, to guide the parent and to provide (peer-to-peer) support and advice. Consequently, a continuous, long-lasting, and proactive relationship between the research teams and the respective parent organisation is recommended. Throughout the different stages of a research project, some form of mentoring, or supervision by experts of the research team, or if available, by “senior” (research experienced) parent representatives should be considered, particularly in case of parent representatives who are new to the research topic. This allows parent representatives to receive a better insight into the research components, to gain experience and confidence, but also for affected parents to address their anxieties or questions. A “person specification” may help to define who you wish to involve. Contact parent organisations to identify appropriate parent representatives who are motivated and related to the research topic. Collaborate with parent organisations in a way that parents in very different conditions can be represented. Parent organisations can support the social relevance of a project during submitting applications. Allow time, as involving organisations or individuals almost always takes longer than expected. Define topics well before potential meetings to allow parent organisations time to do surveys or receive feedback from their community in order to find out broader opinions if necessary. european foundthe care of newPowered by 7 1. Why it is so important to involve parents in research Only once parental insights into the day-to-day reality and the needs of the child and family are clearly understood, all stakeholders can work towards developing practical, implementable, effective solutions which meet the needs of the “end users”, in this case the parents and patients. This will have diverse benefits for the research project itself and for stakeholders: Relevance: Existing gaps or critical issues for parents can be uncovered and picked up by the project at the earliest possible stage; this may result in a wider set of research themes and will ensure relevance for the patients. The focus of research that is in the public interest can be ensured, and any concerns that money and resources are used inefficiently can be averted. Trust and confidence: Parental trust and openness to research can be created by selecting and discussing relevant topics with them at an early stage. „Families need to be at the centre of research done in neonatal units. There are many gaps in our knowledge and we lack many effective treatments. Researchers from the public sector and industry should build their research on the experience of families so that research meets real needs and is acceptable to parents. This Position Paper is an excellent summary of what every neonatal researcher needs to know.“ Dr Mark Turner, Neonatologist at the University of Liverpool and Chair of the European Network of Paediatric Research at the European Medicines Agency „ “Knowledge of the many”: family experiences are critical to any planned project, as aspects of daily life and a variety of lived experiences may be incorporated into the study processes. Variations in experiences can shape attitudes and consequently influence individual opinions and contributions to research. Sustainability: Parents can act as multipliers, or peer educators, in their area of activity for the next generation during and after being involved in a project (prerequisite: dissemination/science communication/translation of research findings for parents). european foundation for the care of newborn infants Powered by 8 „Parents are increasingly anxious about the inclusion of their newborn baby in research. Working closely together with parents in the design, governance and execution of research studies will improve the acceptability of research inclusion requests, and ensure that clinical research maintains its focus on the things that matter to parents, and ultimately their child.“ Prof Dr Neil Marlow, Member of the EFCNI Executive Board and University College London „ 2. Principles guiding and defining the interaction In this section, we discuss the necessary next steps towards an infrastructure and framework that may help to include parents and the patient’s voice at the centre of research projects for neonatal (and child) health. The neonatal patients cannot speak for themselves. They need a deputy voice, which is, by nature, represented by the child’s parents. Increasing the involvement of parents demands a set of principles that all stakeholders of a research project should take into account. For a meaningful and ethical interaction, the involvement should be guided by values and principles, such as Equity, Fairness, Transparency and Independency, or Capacity Building (see also: EUPATI Guidance on Patient Involvement). Successful and mutually beneficial interaction needs to be based on Open Dialogue, Active Listening, Respect and Mutual Trust. 2.1. Equal, fair partnership Parent representatives should participate on an equal footing from the moment a project is taking shape, through to analytics and implementation of study results into clinical practice. During all these steps, they should have