Article Text

Download PDFPDF

“The patient is speaking”: discovering the patient voice in ophthalmology
  1. Samera Dean1,
  2. Jonathan M Mathers2,
  3. Melanie Calvert2,3,
  4. Derek G Kyte2,3,
  5. Dolores Conroy4,
  6. Annie Folkard5,
  7. Sue Southworth6,
  8. Philip I Murray7,8,
  9. Alastair K Denniston3,6,7,9,10
  1. 1 Health Education England (West Midlands), Birmingham, UK
  2. 2 Institute of Applied Health Research, University of Birmingham, Birmingham, UK
  3. 3 Centre for Patient Reported Outcomes Research, University of Birmingham, Birmingham, UK
  4. 4 Fight for Sight, London, UK
  5. 5 Birdshot Uveitis Society, Birmingham, UK
  6. 6 Department of Ophthalmology, University Hospitals Birmingham NHSFT, Birmingham, UK
  7. 7 Academic Unit of Ophthalmology, Institute of Inflammation and Ageing, University of Birmingham, Birmingham, UK
  8. 8 Birmingham & Midland Eye Centre, Sandwell & West Birmingham Hospitals NHS Trust, Birmingham, UK
  9. 9 Centre for Rare Diseases, Institute of Translational Medicine, Birmingham Health Partners, Birmingham, UK
  10. 10 NIHR Biomedical Research Centre at Moorfields Eye Hospital NHS Foundation Trust and UCL Institute of Ophthalmology, London, United Kingdom
  1. Correspondence to Dr Alastair K Denniston, Academic Unit of Ophthalmology, Institute of Inflammation and Ageing, University of Birmingham, Birmingham, West Midlands B15 2TT, UK; a.denniston{at}bham.ac.uk

Abstract

Eye disease can be devastating. The most feared impact is sight loss, but in a number of ophthalmic conditions, there can be wide-ranging systemic, psychological, emotional and social effects of both the disease and its treatment. External tests of visual function, such as visual acuity, are inadequate to understand the overall impact of ophthalmic disease on a patient’s functional vision or daily life. This can lead to a discordance between the patient’s priorities and perspective on the one hand and the efforts of clinicians and other stakeholders on the other hand. In this review, we discuss how the patient is uniquely placed to understand the impact of the disease and can use that position to transform ophthalmic care at the individual and collective level, from research to care delivery. We highlight how the “patient voice” can contribute to key areas, including priority setting in the research agenda, communicating the wide-ranging impact of disease and its treatment as assessed through qualitative research, identifying the outcome measures that matter to the patient through core outcome set development and reporting these outcomes through appropriate patient-reported outcome measures. We also consider the increasing power of the patient voice on health institutions, ranging from broadcasting an individual’s experience of care he/she has received to patient societies influencing future health policy. Finally, we reflect on the challenges that need to be overcome for the patient voice to increasingly influence and improve the delivery of eye care in the future.

  • Public health
  • Vision
  • treatment
  • medical

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

View Full Text

Statistics from Altmetric.com

Footnotes

  • Contributors AD conceived the study. All authors contributed to the design and scope of the study. JM, MC, DK, PM and AD designed the search strategies. SD and AD conducted the literature search. All authors contributed to the review of the literature, in drafting the manuscript and in approving the final manuscript.

  • Funding SS is funded in part by the Birdshot Uveitis Society. AD receives a proportion of his funding from the National Institute for Health Research (NIHR) Biomedical Research Centre based at Moorfields Eye Hospital NHS Foundation Trust and UCL Institute of Ophthalmology. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.