Description and evaluation of the first national patient and public involvement day for thyroid eye disease in the United Kingdom

Background: To ensure appropriate patient-focused outcomes, the National Institute for Health Research (NIHR) in the United Kingdom has made consultation with patients, caregivers, and the public a prerequisite to providing research funding. One method of encouraging engagement with research is through patient and public involvement (PPI) events. We describe the planning and implementation of a PPI day for thyroid eye disease (TED) and evaluate our own event using feedback from delegates. Methods: The Moorfields NIHR Biomedical Research Centre, in partnership with TED charities, arranged the first national PPI day for TED in the United Kingdom. The event included didactic lectures; pre-event and postevent questionnaires; an exhibition with stalls, posters, and an interactive voting wall to determine research priorities; focus group sessions to explore patient experiences and perceptions of research; and one-on-one interviews recording individual patient stories. Results: Of 100 attendees, 70 completed questionnaires. When asked whether the day had provided what they wanted, 48 of 52 (92%) said yes; 3 of 52 (6%) said no. Overall 6 of 52 (12%) rated the event as good; 28 of 52 (54%), very good; and 18 of 52 (34%), excellent. Thirty-six patients registered to participate in further research, identifying "finding the cause for TED," "improving psychological support," and "achieving a better cosmetic outcome" as key priorities. A poor understanding of TED among medical professionals was a common complaint. Conclusions: The event received positive feedback and achieved its key objective of engaging patients, researchers, and clinicians in a two-way discussion about research priorities and improved study design. An invaluable insight was gained into patients' needs for a better quality of life, and we have demonstrated that important data can be captured from such events, providing an evidential basis consistent with the NIHR principles of patient-centered research.