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Bringing together patient and specialists: the first Birdshot Day
  1. Nikolaos Koutroumanos1,
  2. Annie Folkard2,
  3. Rea Mattocks2,
  4. Jenny Wright3,
  5. Wen Xing4,
  6. Claudia Wilson-Barrett1,
  7. Karen Bonstein5,
  8. Carlos Pavesio1,
  9. Mark Westcott1,
  10. Gemma Moore6,
  11. Miles Stanford7,
  12. Catey Bunce4,
  13. Narciss Okhravi1,8,9
  1. 1Medical Retina & Uveitis Service, Moorfields Eye Hospital, London, UK
  2. 2Birdshot Uveitis Society, UK
  3. 3University of the Arts, London, UK
  4. 4R&D Department, Moorfields Eye Hospital NHSFT, London, UK
  5. 5National Institute for Health Research (NIHR) Biomedical Research Centre (BRC) at Moorfields Eye Hospital and UCL Institute of Ophthalmology, London, UK
  6. 6UCL Public Engagement Unit, University College London, London, UK
  7. 7Medical Eye Unit, St Thomas and Guys Hospital, London, UK
  8. 8Centre for Medical Education, Institute of Health Sciences Education, Barts and the London School of Medicine and Dentistry at Queen Mary, University of London, UK
  9. 9UCL Institute of Ophthalmology, London, UK
  1. Correspondence to Narciss Okhravi, Medical Retina and Uveitis, Moorfields Eye Hospital NHSFT, City Road, London EC1V 2PD, UK; UCL Institute of Ophthalmology, London, UK; Honorary Clinical Senior Lecturer, Centre for Medical Education, Institute of Health Sciences Education, Barts and the London School of Medicine and Dentistry at Queen Mary, University of London, UK; narciss.okhravi{at}moorfields.nhs.uk

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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