Patient involvement in combating sight problems
By Karen Bonstein, Ananth Viswanathan and Narciss Okhravi
When discussing the burden of chronic diseases, we often refer to cardiovascular disease, diabetes, chronic respiratory disease, cancer and mental health (Richards 2011) and the impact of eye disease is easily overlooked. However, visual impairment and blindness have wide implications for individuals and families, as well as the UK economy and the NHS as a whole. A report produced by the US National Eye Institute (1998) noted that for older adults ‘visual problems have a negative impact on quality of life equivalent to that of life-threatening conditions such as heart disease and cancer’. The Guide Dogs’ Cost of Blindness report (2003) illustrated that in England, the annual costs for individuals registered as blind or partially sighted in 2002 ranged from £1.4 to £2.9 billion. The true cost may be four times higher if the assumption is true that only a quarter of visually impaired people are actually registered (www.healthyeyes.org.uk/index.php?id=25).
Globally much effort has recently gone into making the voices of patients heard and involving them in the design of research projects that will answer questions that are important to them. At Moorfields Eye Hospital NHS Foundation Trust, building on an active Patient Experience Committee, we engaged with specific patient groups to set up Patient Days focusing on clinical care, research and education. We held two events recently: one for a rare eye disease, Birdshot Uveitis, the other for a common eye disease, Glaucoma. Both diseases are currently incurable, and can often worsen during a patient’s lifetime.
What happened at our Patient Days?
The Birdshot Patient Day
The first UK Birdshot Day (involving 126 patients, supporters and healthcare professionals) was set up by a team of staff from four hospitals in the UK and Paris and the Birdshot Uveitis Society (BUS)
www.birdshot.org.uk. In consultation with patients, we developed five aims for the event, which were all achieved:
1. to reduce the sense of isolation of patients with this rare disease
2. to raise the profile of the disease in the UK
3. to allow a two-way exchange of information between patients and professionals
4. to help to obtain a better visual outcome for patients
5. to provide a base for research.
The Glaucoma Patient Day
This event, with 296 delegates, focused on clinical care, research and education for patients, carers, students and healthcare professionals. Glaucoma patient advocates formed part of the organising committee. Despite the disease being common, just under half the patients had never met anyone else with glaucoma. We captured patients’ stories on video and have since used these for educational purposes.
What happened after the events?
Patients spoke of ‘a new sense of hope for the future’.
A five-minute DVD about the Birdshot event was prepared for the Birdshot Uveitis Society and the National Institute for Health Research Biomedical Research Centre for Ophthalmology and can be viewed at www.brcophthalmology.org/Events/BirdshotDay2010.aspx. A DVD of the entire day was sent to all patient participants and healthcare professionals involved in the care of Birdshot patients.
The Birdshot National Research Network (involving patients and healthcare professionals) has been created through the Birdshot Uveitis Society and research is now planned, including a Birdshot Biobank, to improve our approaches to this rare disease.
The Glaucoma event led to 105 patients formally registering an interest in being involved in research design, conduct and dissemination. This invaluable community is already being used by the Moorfields Glaucoma Service to develop new research.
Our work has had national and international impact having been presented at conferences worldwide. The importance and impact of patient involvement in research has become very apparent, leading to new partnerships between clinicians and patients for other eye diseases and for systemic diseases. Our work has also been presented at parliamentary level – both in London and Brussels.
Importantly we have learnt that issues which were concerning clinicians are not always of concern to patients. We now understand that ‘unless you ask, you don’t actually know’.
Article references available on request.
About the authors:
Karen Bonstein is Manager of the National Institute for Health Research (NIHR) Biomedical Research Centre (BRC) for Ophthalmology. Narciss Okhravi and Ananth Viswanathan are Consultant Surgeons at the NIHR BRC for Ophthalmology and were the Clinical Leads on the Birdshot Patient Day and Glaucoma Patient Day respectively.
Contact: Narciss Okhravi