My name is Eva Fenwick and I’ve just started a PhD with the Health Services Research Unit here at the Centre for Eye Research Australia and I’m working for Ecosse Lameroux. He is my primary supervisor and my co-supervisors are Dr Gwyn Reese and Dr Mohammed Derani(Need to check spelling). My PhD is looking into developing and validating a novel tool to measure the impact of diabetic retinopathy on people’s quality of life.
The tool that we’re going to create we’re calling an “item bank”. This is quite a novel way to approach this idea. It’s not a typical questionnaire, it’s a pool of items which we’ll have pooled from the various resources, from focus groups and literature and that sort of thing and with some computer software, we’re going to be able to create a system whereby you can pull items from the pool and tailor them to people with different levels of disability caused by their eye disease.
So, it basically means that you don’t have a static list of questions. You’ll have items that you can allocate that are harder or easier depending on someone’s disability. So, it’s more precise, it’s more accurate and it’s more flexible and the following second question will be asked based on the answer to the first question and so on. So it’s kind of like a stepwise progression so that you can pinpoint someone’s level of disability, or the impact it has on the quality of life really specifically. Whereas if you use a normal questionnaire – say ten items – static items, that you’ve pulled out and you apply them to a group of people with different symptoms - some of them will have no symptoms and some of them are almost blind - you’re not going to get a very good grasp on it because some people are going to say “that’s too easy, I can do that” and you’re going to get a ceiling effect and some people are going to say “I can’t possibly see that, that’s too hard” and you’re going to get a floor effect and you’re only going to get an accurate measure of people that fall in the middle spectrum.
So it’s not ideal to use as a tool to measure the impact, whereas we’re hoping that our tool will be really able to zone in, giving a really accurate picture of quality of life. So, it’ll be more useful for measuring interventions and clinical treatments.
Why is it important?
I think my PhD is really important because it’s filling a gap that exists at the moment and I think it’s going to have some really good translational outcomes because people are hopefully going to be clambering to use this tool once I develop it to assess the effectiveness of new interventions for people with DR, or diabetic retinopathy and to assess new treatments for diabetic retinopathy, because they’re emerging all the time – laser treatments, and to see how these new innovations in the field are actually working at the patient level. So I think, I hope that it’s going to be widely used and snapped up.
Yes, there’s a gap in two ways at the moment. There currently exist some general questionnaires to capture quality of life for general eye or visual problems. There are also ones for glaucoma, or AMD, or cataract. There’s no really good one that exists for diabetic retinopathy. That’s the first way it’s lacking. Secondly, this item bank and computer-adaptive technology to go with it, is a novel approach to the whole area and I don’t think it’s been used in eye research before.
This is really early stages at the moment so all I’m doing at the moment is background reading of literature on diabetes and diabetic retinopathy because I don’t come from a science background, I come from an Arts background. So, I’m kind of picking things up as we go along.
I’ve got a fair idea of what steps my PhD will have. Firstly, for the first couple of months, there’ll be background reading from the literature. Secondly, I will conduct focus groups with people with DR, or diabetic retinopathy pulled from a current project that we’re running about diabetes and we’ll be asking them questions about the impact that DR has on their quality of life. From those focus groups and the literature we’ll be creating an item bank and we’ll run these through a statistical analysis technique called RASH analysis that will indicate which items are doing the job and which items are not capturing what they should capture.
Then we’ll create a pilot instrument and this is going to be given to two hundred people with DR and it’s going to be statistically analysed to see that that is doing what it is supposed to be doing. So I guess that is going to be the first 18 months to two years. Then the final version will be produced and administered to another two hundred people to be validated. And hopefully, in the last six months, if there is any time left over, we’re going to create the final software so that we can put the item bank into real use. So the writing up will be going on the whole time I imagine.
Path to a PhD..
Throughout my academic life, I’ve been both interested in Arts and Science and at the end of year 12, when you have to choose university I tried to choose Arts/Science. I got into Science and I started doing a semester of Science, but for one reason or another it just didn’t fit so I quit, took a year off and then came back and applied for Arts to try something different and found Linguistics and Anthropology which I absolutely loved. So I ended up majoring in those two things and doing Honours in Linguistics. But throughout my academic career – and this is where the link comes in – I worked as a casual research assistant at the population health division of Melbourne Uni epidemiology department, it’s called MEGA – Molecular, Environmental and Genetic Analytic Epidemiology – and I worked for them looking at breast and bowel cancer studies and I was in charge of data entry, data maintenance and data cleaning.
I got really interested in public health through that and looking at health services and health services research and health outcomes. So, that peaked my interest in further research. I undertook my postgraduate research in Arts, so I did a Masters in Linguistics. I finished at the end of 2007 and then I applied for a job here, which I saw advertised and that is how I’ve come into “eyes”- just through general interest in Science as well. I think that my skills from Arts are easily translated into Science. Not the technical skills, but the research skills, analytical skills and writing skills. It’s all very similar so, I guess I’ve been kind of jumping from one thing to another, but all working simultaneously for the last ten years and that’s how I’ve ended up here.
I’ve been working in the Centre for Eye research for about 18 months now, and Ecosse, my boss – soon to become my supervisor – has been extremely supportive and he is more of a mentor really and I guess he recognised my research potential, if I can put it that way. I’ve been helping him with paper writing, a bit of statistics and whatever. So he has been looking out for topics for me and he found this one that he thought would really suit me and we discussed it long and hard. Basically, I could keep doing what I’m doing as a research assistant, but it wouldn’t take me as far as I’d like to go. I really need to get the qualification under my belt to become an independent researcher and in three years time I will end up with this degree where I can really flourish, whereas if I just stayed as a research assistant I would not be able to grow as much as I could with the qualification.
I think it is a really good idea to have some experience in the field before you jump into a PhD, because a PhD is a massive undertaking. I have an idea of what it involves from my Arts experience of Masters. I think it is really hard to start from scratch where you learn everything from the start again. I know you’ve got three years to do a PhD, but it’s actually not that long when you have to set up a project, do all the background reading, etc. If you come with some prior knowledge and you can jump in at a midpoint, then you really do have that advantage of hitting the ground running.
Motivation..
It’s so, so interesting. Research is always different. On a day-to-day basis my job is never the same and you know that you’re going to come into work each day and do something really valuable, really interesting and really different to get to a point. It’s not coming in and doing “nine to five” and doing the same thing. And hopefully what you end up producing will be actually valuable in the field. It will have translational implications as well, not just be never seen again.
Choosing a supervisor, topic, team...
I think that there are several things that are really important for a successful PhD. First of all a really good supervisor-student relationship - so respect on both sides; a good topic that actually suits the student - so not being too ambitious with the student having to learn a whole new area (technical area) that they were not really familiar with – it’s much more difficult than doing something that they have background in; and a good supporting team, which I feel is here and a project which has a clear chance of success; that is not too ambitious and that perhaps already has some support from other projects in terms of recruitment, or other project infrastructure already in place.
It’s a bit too early to say. I’ve only just come to grips with the idea of doing a PhD, I hope that I’ll be able to apply my knowledge and expertise through creating this item bank to other areas in the field that might benefit from it as well and keep doing something along the same lines.
Fears..
I’m nervous in case I don’t have what it takes to do it. I know it’s going to be a lot of hard work. Ecosse has made no bones about it. He’s told me that it’s going to be a long, hard haul, but it’s going to be really rewarding. So, I’m just confident actually that the fun of doing it and the worth behind it all will override all those other day-to-day difficulties. I’m confident that I’ll be able to do it.