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Bringing together patient and specialists: the first Birdshot Day

Abstract

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.

  • Choroid
  • Retina
  • Inflammation
  • Epidemiology

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