‘Inspiring Stories’ with Arjuna Ratnayaka
Lecturer in Vision Sciences
This is part of the Engaged Medicine ‘Inspiring Stories’ blog series. The blogs explore the stories behind outreach and patient-public engagement activities of staff and students from the University of Southampton’s Faculty of Medicine.
What do you do to engage and outreach with the public or patients?
I take an active role in public engagement and outreach events centred on raising awareness of blinding diseases. This includes speaking at roadshows and at conferences for patients and the public, which are organised by eye research charities, involvement in workshops and local/regional events for smaller groups. I also conduct laboratory tours for patients, the public and philanthropic donors. Furthermore, as a member of Public Policy Southampton (PPS), I am involved in policy initiatives to increase awareness of blinding diseases in the UK and encourage increased funding for basic research into sight-loss.
What has driven you to participate in public engagement or patient involvement?
Sight-loss is a major health issue and a growing problem in our ageing society. Currently, ~10% of NHS outpatients are cared for in ophthalmology clinics. However, eye research receives only 1.5% of government research funding. Many of these blinding diseases have no effective treatments. Patients and their families speak movingly of the consequences of blindness without any real prospect of a meaningful cure. Where blinding diseases are inherited, I hear from parents who are already visually impaired in mid-life voice fears for their children, as they also carry the causative disease-gene and predicted to develop life changing visual problems in turn. These reasons have driven me to engage with patients, their families as well as the public, so we can raise awareness of blinding diseases and through public education and new policy initiatives, increase much needed funding into eye research.
How did you get started with Public Engagement or patient involvement?
I first got started by conducting laboratory tours on behalf of the Gift of Sight Appeal (https://www.giftofsight.org.uk/), and showing patients and their families how we are trying to develop effective new treatments for incurable blinding diseases. This soon expanded to speaking at local events and regional roadshows on behalf of several sight research charities. I was also invited to speak at annual conferences of the UK Macular Society, which brings together one of the largest gathering of patients with blinding diseases, including those of working age. After attending a memorable talk in 2019 at the Faculty of Medicine by Professor Chris Whitty, the UK government’s Chief Medical Adviser, I was inspired to engage with the policy implications of my work. I become a member of Public Policy Southampton (PPS) and over the lockdown period spent time developing new skills in this area including learning to write policy briefs, attending policy conferences (The Foundation for Science and Technology Future Leaders Conference) and workshops (policy masterclass with Professor John Denham). I see the policy aspect as a continuation of my research as well as patient/pubic engagement activities- a powerful means to an end, if you like, to raise awareness of blinding diseases and to increase funding into discovering cures for sight-loss.
Why do you consider Public Engagement / Patient Involvement to be important?
Currently, there are 2.5 million people in the UK living with some form of sight-loss. In 2013, I established the first laboratory at Southampton that is dedicated to studying retinal cell biology. Many of my projects investigate age-related macular degeneration (AMD), the most common form of sight-loss amongst adults in the UK. In 2020, the Macular Society estimated ~600,000 AMD patients in the UK, a condition that can only be managed in some patients, but has no effective cure. Without future research, one in three readers of this article will have statistical odds of developing some form of AMD during their lifetime. I do not see much point in doing eye research without actively engaging with those who are directly affected. I feel this makes my work relevant to patients and that research efforts are informed by their requirements. This has the added potential benefit of enhancing the quality and impact of research, providing immense professional satisfaction that my work could directly benefit patients. In this respect, the bench-to-bedside environment at the Faculty of Medicine has been an invaluable asset.
What reaction do you get during an engagement event?
The reactions I have received have been a mixed bag. On one hand, patients and their families are very grateful for the research that could potentially lead to developing novel treatments for blinding diseases. There is a real thirst for knowledge. The audiences are often highly knowledgeable, asking insightful questions that can hold their own in a fellowship interview panel. On the other hand, there is also a lot of frustration, as patients and their families often fail to come to terms with the apparent slow pace of research and new discoveries that could benefit their particular eye condition. These are largely born by their fears of blindness, polled by eye research charities to be the second most feared news next to a cancer diagnosis. These conversations become even more difficult when speaking to those with inherited blinding conditions that are passed on to their children. However, I feel this researcher-patient relationship is very important and is an on-going dialogue.
What do you feel is the impact of the engagement events, what happens as a result?
The impact of these efforts can be slow to manifest and often too amorphous or intangible to measure, which is very frustrating. Indeed, this assessment is echoed by many eye research charities, which pro-actively engage with patients and the public with larger staff numbers and with more resources. The stakeholders in the sector are always on the lookout to maximize impact with their efforts. There is still a surprising lack of awareness of blinding diseases and their consequences. The slow pace of developing effective new treatments is underscored by chronic under-funding into eye research. In addition to engagement activities with patients and the pubic, change through new policy initiatives could make a significant difference. Recently, Dr Jenny Dewing, a post doctoral research fellow in my group and I were awarded funding from UKRI through PPS (New Things Fund) for a project to increase awareness of blinding diseases and to raise the profile of funding for eye research in the UK. Please follow this link for details of our findings. This award also enabled us to engage a professional team of filmmakers to create a short movie, which is now in the final stages of post-production. I hope you will be able to view this soon via a link circulated in eNEWS. Another outcome of patient and public engagement, which may appear unconnected at first, is identifying talented early career scientists who are committed to eye research and who can make a difference to patients in the future. I am privileged to work with a group of such individuals whom I encourage to participate in all aspects of patient/public engagement. These researchers have gone on to win various accolades and have engagement profiles of their own. For instance, Dr Savannah Lynn is a recipient of a prestigious NC3R Fellowship and acts as an NC3R ambassador at UK and international conferences and at summer schools. Dr Jenny Dewing acts as an ambassador for Retina UK, which funds her work at Southampton. During her studentship, Dr Ellie Keeling acted as an ambassador for the Macular Society who funded her PhD, and is currently working on a project funded by a US drug-discovery company in pre-clinical testing of new compounds for retinal degeneration. Ms Rebecca Miller, a new PhD student funded by the Macular Society will act as an ambassador and engage with patients and the public on behalf of the society. This work is in addition to my teams’ on-going activities with the Gift of Sight Appeal, which includes public/patient engagement and fundraising on race days, at public lectures, paddle-car racing and running half-marathons etc. Last month Dr Dewing and I had a thrilling ‘behind the scenes experience’ when the film crew was on location for interviewing Professor Andrew Lotery at Southampton, and another shoot with an AMD patient Mr Russel Tribe at the Royal Southern Yacht Club in Hamble for our public engagement movie. The various digital content generated during the film production will be used as future assets in our engagement efforts, which is in partnership with the Gift of Sight Appeal and Sight Research UK. Engagement and outreach activities informs better research, has the potential to bring about meaningful change and creates new opportunities. I would encourage others to become involved in this most worthwhile endeavour.
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