Working in eye research: Louise Cowen’s story

Researchers at the Oxford Eye Hospital, John Radcliffe Hospital, Oxford are inviting people with age-related macular disease (AMD), a common condition that causes blurring of the vision, to take part in a study which uses an app to monitor participants at home.

AMD is the leading cause of blindness in the UK and people with the condition require regular monitoring to prevent deterioration. Eligible participants need to have a diagnosis of wet AMD or be at high risk of developing this condition. 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 is a partnership with eye health company Okko Health and is recruiting in Nottingham and Oxford, where more than 200 people have volunteered to take part.

Research Practitioner Louise Cowen at Oxford University Hospitals NHS Foundation Trust explains what is involved in the study and what motivates her to work in research.

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

What is this research study about?

The study is looking at whether it is possible to measure how well participants can see details and any distortion using 'tap what you see tasks' on an app that is downloaded onto a phone or tablet. The study explores if using the app is as accurate as the in-person sight tests conducted at the hospital. A long-term aim would be to see if this tool could be used to reduce the amount of time patients spend in hospital at appointments, as it's a test that can give clinicians key information without seeing the patient face to face.

What does taking part involve?

There are two tasks to complete which should be completed three times a week. The only stipulation is that participants do not complete the tasks on consecutive days, otherwise, they can do it at any time and anywhere that has an internet connection. 

The participant can decide if they would like to test just one of their eyes or they can test both. The tasks should take no longer than 10 minutes, so around 30 minutes a week is required to be able to take part. Once the tasks have been completed, the participant sends their data to the OKKO dashboard, so a record of their results can be kept for data analysis. The study period is 12 months, however, like with any research study, the participant is free to withdraw at any point and without giving a reason.

Any participants taking part will still need to attend all of their usual appointments and contact the usual departments if they have any concerns about their vision.

What motivates you to work in research?

There are many aspects of working in health care research that keep me motivated in my job as a Research Practitioner. However, collaboration is the key theme that underpins all these aspects. Being able to collaborate with all staff members, all of whom bring different experiences and knowledge and contribute to a common goal is really motivating. Related to this, the opportunity to collaborate with patients and help them realise that they are not just a participant being assessed in a study, but that their contribution is helping to shape future research and health care, is the key aspect of my job that keeps me motivated and inspired.

What would you say to people about considering whether to take part in research?

Firstly, I would say to potential participants to take as much time as they need to digest any information that they are given and ask as many questions as they like. It's important for them to remember that it is a decision they have to make in their own best interests and not to try and second guess what they feel others may want them to do. Taking part in a research study can give participants unique opportunities, both because they may have access to certain treatments or interventions that are not readily available and they often have staff members or teams to help monitor their care, which can be extremely beneficial.

If you are interested in taking part in this study, more information can be found on the study’s Participant Information Sheet.

Read about participant Robert Williamson’s experience of taking part in the study.

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