title: Description and evaluation of the first national patient and public involvement day for thyroid eye disease in the United Kingdom.
abstract: 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.
authors.affiliation: 1 Moorfields Eye Hospital , London, United Kingdom .
authors.forename: Henry B
authors.initials: HB
authors.lastname: Smith
authors.forename: Carol
authors.initials: C
authors.lastname: Porteous
authors.forename: Catey
authors.initials: C
authors.lastname: Bunce
authors.forename: Karen
authors.initials: K
authors.lastname: Bonstein
authors.forename: Janis
authors.initials: J
authors.lastname: Hickey
authors.forename: Colin M
authors.initials: CM
authors.lastname: Dayan
authors.forename: Gill
authors.initials: G
authors.lastname: Adams
authors.forename: Geoff E
authors.initials: GE
authors.lastname: Rose
authors.forename: Daniel G
authors.initials: DG
authors.lastname: Ezra
mesh_terms: D000328:Adult; D000368:Aged; D005260:Female; D049970:Graves Ophthalmopathy; D006801:Humans; D008297:Male; D008875:Middle Aged; D010358:Patient Participation; D011795:Surveys and Questionnaires; D006113:United Kingdom