What is your background and why did you become a researcher?

I am an optometrist from India, and I come from a family of academics, which prompted my interest in research.

When I was doing my internship, I was involved in a number of research projects, and that also really motivated me to become a clinician-scientist and help fill in the gaps in knowledge.

I wanted to pursue a Master’s and PhD but this wasn’t available in India, so that made me come to Australia, which turned out to be the perfect place for me.

Why did you choose to research keratoconus?

That’s an interesting question. When I started working on my Master’s project, I found that there were lots of people looking into short-sightedness, but not many new discoveries being made. I wanted to focus on a condition that hadn’t attracted as much attention.

After some investigating, I came across keratoconus. This was in 2009, and when I discussed the idea with other researchers, they said to me “oh it’s a very rare condition, you wouldn’t get many participants.”

But that didn’t stop me. Within a year and a half, I recruited around 300 participants. That was a big surprise, not only to me but to everyone else. I named the project the Australian Study of Keratoconus.

Today we have around 600 participants who have filled out the risk factor questionnaires or donated blood samples. We also have clinical data for around 2000 patients – that’s a huge amount of data.

What is the most interesting aspect of your research?

Sometimes when people read about my research, they only see the corneal tissue work or the artificial intelligence research, but there are other aspects equally as important.

When I started working with participants in the study, they had so many questions for me: “Do you know the risk factors?”, “Do you know what causes the condition?”, “Do you know if there is an association with eye rubbing?”

All these questions kept coming up, which actually helped me expand the study from genetics and clinical, to looking at environmental risk factors and also things like economic burden and quality of life – things that no one had ever studied, and which are completely participant-driven.

My interactions with participants have led to many of our research questions, and I’m really proud of that. They are the driving force behind my research, and I want to do the very best possible for them.

Another interesting aspect of my research is the genetic part of the research. We had found some genes in the Australian population and became aware that other researchers in other countries were also trying to work on the same genes. For context, 300 participants is a small number for a genetic study. What we really needed was thousands of participants to provide enough data to start identifying genes that might be associated with keratoconus.

So that got me thinking, why can’t we all work together and collaborate as a team, instead of working each on our own? And that led to the Keratoconus International Consortium, a worldwide collaboration to develop global guidelines and further other areas of keratoconus research.

Why is collaboration important?

We need collaboration to extend into all areas of keratoconus research, such as identifying risk factors and classifying keratoconus severity, and to ensure consistency at a global level.

For example, I might classify a patient as having mild keratoconus and recommend a particular management plan. But the same patient could walk into another clinic, be classified as moderate and recommended a different treatment.

Just imagine yourself as the patient and how confusing that would be. That’s why we need global research informing the diagnosis and management of keratoconus. If your aim is to better understand the condition and come up with the answers, then that should lead to global collaboration.

What are the benefits of being a clinician-scientist in vision research?

The main advantage is being able to understand the nuances of the patient concerns and to put those concerns into a research focus.

Take the question of whether eye-rubbing is associated with keratoconus. There have been various attempts to try to answer this question. A lot of this research requires patients to answer ‘yes’ or ‘no’ to the question of whether they rub their eyes.

As a clinician, I know that it can be difficult for patients to answer that question. As they have the condition, they can feel embarrassed about answering honestly, thinking that they may have contributed to their condition.

The way around this was to design a questionnaire that looked more indirectly at eye-rubbing patterns like touching the eye, using contact lenses, or rubbing around the eye. My knowledge as a clinician helped me understand how to collect better data.

The other benefit that I see is that I can motivate more clinicians to take up research. In particular, being a woman in science, I’m excited when I can inspire more women to come on board.

They are my three drivers: improving the lives of patients, nurturing new clinician-scientists, and getting women involved in science.

How has your research helped make a difference for people with keratoconus?

The economic burden questionnaire is the perfect example of how we have been able to use our research to make a real difference.

Prior to this research, cross-linking surgery (one of the surgeries that can prevent keratoconus advancing to severe stages) wasn’t covered by Medicare. After we analysed the answers to the questionnaire, my co-researcher Professor Mark Daniell (CERA’s Head of Corneal Research) took our report and recommended that cross-linking surgery be included in the Medicare Benefits Schedule (MBS) – and it now is!

Why are community outreach and education important?

I’m involved in the Science in Schools program, and what really drives me is that a lot of school students don’t know what a scientist does. They think it’s very boring.

When they see me, they say “Oh your hair is coloured, you don’t have glasses, you’re wearing a colourful dress.” That’s their first impression. And then they say “Wow, being a scientist is not boring.”

It’s important to challenge this preconception of what a scientist is or does, because unless they know what science is, and that science involves exploring new things, we won’t have the next generation.

It’s also important to do community outreach to promote early detection. If children get their eyes tested early, they can get treated early.

It really surprises me that so many Australians don’t know that eye testing is bulk-billed. I ask them when they last had their eyes checked and some say more than 10 years ago! I tell them that there is no excuse to not get it done, and that by getting your eyes checked you will be preventing many avoidable causes of blindness.

As much as we are doing research within these walls, it’s important that we translate it and communicate it as well, because while a publication is great to spread information to our peers, if the knowledge isn’t shared with a general audience, I think that would be a failure.