Lucy Dixon, volunteer and past chair of PCD support UK and member of the BEAT-PCD management committee, and Myrona Goutaki, researcher and co-chair of BEAT-PCD take the opportunity to discuss about partnerships between researchers and people living with PCD, as part of the PCD awareness month 2025.
Patient involvement is nowadays a focal point in health research. Although much progress has been made to set up a good framework and encourage active involvement and engagement of people with lived experiences in research, we still need to take further steps to achieve meaningful partnerships. In this webinar, the two speakers, who have collaborated on several projects, including the participatory Living with PCD study and an international survey on patient priorities for PCD research, discuss the value of patient engagement and involvement to the researchers and to the patient partners, share their experiences, and give advice on how to improve collaborations between patients and researchers and on selecting and maintaining patient partners in PCD research.
