RT Journal Article
SR Electronic
T1 “The patient is speaking”: discovering the patient voice in ophthalmology
JF British Journal of Ophthalmology
JO Br J Ophthalmol
FD BMJ Publishing Group Ltd.
SP 700
OP 708
DO 10.1136/bjophthalmol-2016-309955
VO 101
IS 6
A1 Samera Dean
A1 Jonathan M Mathers
A1 Melanie Calvert
A1 Derek G Kyte
A1 Dolores Conroy
A1 Annie Folkard
A1 Sue Southworth
A1 Philip I Murray
A1 Alastair K Denniston
YR 2017
UL http://bjo.bmj.com/content/101/6/700.abstract
AB 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.