Case study: Taking part in eye research: Robert’s story

Robert Williamson, 70, took part in a study at the Oxford Eye Hospital at the John Radcliffe Hospital, Oxford which uses an app to monitor participants at home who have age-related macular disease (AMD), a condition that causes blurring of the vision. 

AMD is the leading cause of blindness in the UK and people with the condition require regular monitoring to prevent deterioration. Dry AMD is common and occurs gradually, whereas wet AMD is less common and occurs more quickly. There is no treatment for dry AMD. Treatment for wet AMD includes an injection into the eye, to prevent the deterioration of blood vessels.

The patient-centred smartphone AI for protecting vision in macular disease study uses an app to measure the participant’s condition at home through on-screen games that monitor the ability to see details and levels of distortion. The data from the app can help identify people who need an in-person appointment and further treatment and those who can continue to monitor their eye health at home. The study, a partnership with eye health company Okko Health, is recruiting in Nottingham and Oxford, where more than 200 people have volunteered to take part.

Why did you choose to take part in the trial?

Following my diagnosis, I was approached by Oxford Eye Hospital staff who explained the purpose of the study and asked if I would like to take part. At the start of my involvement in the study, I was about to change to an alternative injection regime that would mean me visiting the hospital less frequently, therefore having my eye condition inspected less often. By using the app I can check for any changes to my vision which gives me extra confidence that my vision is stable, or flag the need to return to the hospital for examination, whilst providing useful data for the research team at Oxford and Okko Health. I was delighted to be asked to support and participate in this study to support the important research and be able to monitor my condition myself. 

What was your experience of taking part in the trial?

The Okko Health app was easy to load onto my iPad and is simple to use. After a couple of days, it became very familiar. I use the app 3 times a week to measure my sight and it only takes around 7 or 8 minutes to complete. It was noticeable that there was a slight improvement in the results after I started using the app. I immediately felt I was getting frequent checks on my eye condition and any changes which I found reassuring. Now, I feel much more in control of my condition.

What would you say to other people about taking part in research?

The research community is gaining insight into the ability of this app to track changes in eye condition, whilst I have a tool to monitor my own health. I can contact the Oxford Eye Hospital team if I detect any significant changes in my eye condition. The experience has been a real ‘win-win’ situation and I hope others can benefit from the research in the future.

Talk to your healthcare professional about taking part in research or search for studies seeking volunteers at Be Part of Research.