RT Journal Article
SR Electronic
T1 Bringing together patient and specialists: the first Birdshot Day
JF British Journal of Ophthalmology
JO Br J Ophthalmol
FD BMJ Publishing Group Ltd.
SP 648
OP 652
DO 10.1136/bjophthalmol-2012-302134
VO 97
IS 5
A1 Koutroumanos, Nikolaos
A1 Folkard, Annie
A1 Mattocks, Rea
A1 Wright, Jenny
A1 Xing, Wen
A1 Wilson-Barrett, Claudia
A1 Bonstein, Karen
A1 Pavesio, Carlos
A1 Westcott, Mark
A1 Moore, Gemma
A1 Stanford, Miles
A1 Bunce, Catey
A1 Okhravi, Narciss
YR 2013
UL http://bjo.bmj.com/content/97/5/648.abstract
AB Background The importance of patient and public involvement (PPI) in healthcare decisions and research is increasingly recognised. This paper describes the aims, delivery, evaluation and impact of a ‘Birdshot Day’ organised for patients with birdshot uveitis, their carers and healthcare professionals. Methods Delivery of this event involved the close collaboration of patients with a large number of different healthcare professionals. The event's evaluation used established social research methods including qualitative questionnaires pre, post and 6 months following the event. The results were statistically analysed. Results Results indicated that this event significantly educated both patients and professionals. The sense of isolation felt by patients was reduced and networking was developed among all attendees. Patient priorities for research were recorded and invaluable insight into patients’ needs for a better quality of life was gained. Conclusions The first undertaking of this novel PPI event achieved all its aims. It became even clearer that fundamental questions remain about birdshot uveitis, including aetiology, pathogenesis, practical clinical issues and impact on quality of life. These questions can only be addressed in partnership with patients. To this end, patients and professionals came together under the banner ‘Team Birdshot’ and the National Birdshot Research Network was launched.