Patients
CLARTIY aims to involve patients at every stage of the research project. We incorporate the patient's voice in shaping research directions and deciding how and what to communicate to patients, their caregivers and health care professionals. The perspectives of patients help us ask better questions and strengthen the relevance and impact of our work.
Patients advise us on what kind of information they consider to be useful or meaningful to share. Based on this input, we tailor our communication materials to match the needs and wishes of patients.
We also work collaboratively with other involved stakeholders, such as healthcare professionals and the broader public, to co-create effective communication and engagement strategies.
Our collaboration with ReSViNET uitklapper, klik om te openen
We reach out to patients through our partner, the ReSViNET Foundation, a globally recognized non-profit organization dedicated to alleviating the burden of respiratory syncytial virus (RSV) infection. ReSViNET fosters global collaboration among researchers, the health sector, governments, international statutory bodies, non-profit organizations and the wider civil society to coordinate action and raise awareness around RSV infection prevention and treatment.
ReSViNET has a strong track record in patient and public engagement. With many years of experience, the foundation is dedicated to raising awareness and increasing knowledge about RSV among the public, healthcare professionals, and policymakers.
Educating these groups about RSV’s symptoms, risk factors, and preventive measures is a critical step in combating the virus. By fostering awareness, ReSViNET empowers individuals to understand the importance of early detection and equip them with the tools and knowledge needed to take preventive actions to protect themselves and their communities.
ReSViNET’s commitment to patient and public engagement ensures that these efforts are grounded in real-world perspectives, making this work both impactful and deeply relevant.
The RSV Patient Network uitklapper, klik om te openen
ReSViNET’s Patient Network was initially formed by parents whose children had been hospitalized due to an RSV infection in early childhood. It has since expanded to include expectant parents and adults over 60, which is another group at increased risk of severe RSV illness.
This patient network includes a Patient Advisory Board that contributes to RSV related research project. The board provides a patient perspective that enhances the relevance, quality, and outcomes of the research.
By integrating the advice of patients into CLARITY, we ensure that our work not only advances scientific knowledge but also delivers tangible benefits to those most impacted by the virus.
The Patient Advisory Board plays a vital role in our research for several reasons:
Patient-centred Research
The network ensures that research aligns with the actual needs and experiences of those affected by RSV. By incorporating the patient perspective, research becomes more relevant and impactful.
Enhancing research quality
Parents with firsthand experience of RSV offer unique insights that improve the design and execution of clinical studies. These contributions help ensure that study outcomes are meaningful for the RSV patient community.
Raising awareness and advocacy
Networks like the RSV Patient Network are instrumental in raising awareness among the public and policymakers about the importance of preventing and managing RSV. This advocacy can lead to improved healthcare policies, and broader public education.
Building trust and communication
Engaging parents in advisory roles fosters trust within the community. These parents serve as ambassadors, bridging communication between researchers, healthcare providers, and the public.
Informing policy and funding
The voices of affected parents are powerful in shaping healthcare policies, guiding public health initiatives, and driving funding decisions for RSV prevention, treatment, and research.
Read more about the RSV Patient Network