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Plotting a course along the treacherous glaucoma pathway

04/10/2018By Matthew Woodley
It’s been less than nine months since Annie Gibbins took over as CEO of Glaucoma Australia, but as MATTHEW WOODLEY reports, that’s been more than enough time to enact significant change in the pursuit of her overall goal.

To the new CEO of Glaucoma Australia (GA), Mrs Annie Gibbins, the mission is simple: Eliminate glaucoma blindness.

Unfortunately, this clarity of focus flatters to deceive the overwhelming task ahead of her and the rest of Australia’s stakeholders in this fight – after all how are you supposed to tackle a disease that 50% of the sufferers don’t even know they have?

Of course, it doesn’t end there. The incurable nature of the disease means treatment and management are currently the only option for clinicians hoping to slow the inexorable creep of darkness from enveloping their patients, but even this is troublesome. Poor adherence rates related to the use of eye drops frustrate efforts to control the disease, while imperfect surgical options are often fraught with complications, ineffectiveness or both.

Minimally Invasive Glaucoma Surgery (MIGS) is a recent addition to the suite of options clinicians can offer patients, but despite campaigning from many sectors of the ophthalmic professions, it is still essentially restricted to those patients who also need to undergo cataract surgery. The recent recall of Alcon’s CyPass Micro-Stent, due to implanted patients suffering significant endothelial cell loss, is also a reminder of how new and comparatively untested this technology is.

"From the moment I came into the role our mission has been to eliminate glaucoma blindness"
Annie Gibbins, CEO of Glaucoma Australia

In the face of all these obstacles, it would be easy to set soft targets and temper expectations, but Gibbins has not shied away from the goal she set when assuming her leadership role in February.

“Traditionally Glaucoma Australia has supported people at a more advanced stage of the disease after they’ve been referred by an ophthalmologist – they’ve been a patient for quite a period of time and then they’re sent to us for further education and support,” she explains.

“But our mission is to eliminate glaucoma blindness, and to do that we need to be very proactive about having a plan of action to educate and support people from the moment of diagnosis and throughout their glaucoma journey.”

Patient support

To achieve this, GA has established a four-stage treatment pathway designed to capture everyone, from glaucoma suspects right up to the most serious cases. It has also realised that the task is far too large to tackle on its own, so it recruited help.

“Feedback from our optometry, ophthalmology and pharmacy committees along with broader stakeholder engagement was encouraged during the pathways design,” Gibbins says.

“It’s called a patient support journey, but if you're a health practitioner and you refer to us, you’ll also want to know what our referral response is and what we do with your patient. So we can now clearly inform health practitioners what, when, why and how our services fit in the collaborative care pathway.

“I wanted to be very upfront that if a clinician refers their patient to us, this is what we will do – this is how we support and enhance the information that you’ve already been giving that patient to complement that care.”

The patient support pathway harnesses digital technology and electronic referral systems to promote screening for at-risk individuals, while it also helps link patients with support services and education resources. Along the way patients receive personalised education and support targeted at critical, high risk periods throughout their journey.

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National data hub

The main goal is to impact detection rates, improve patient knowledge, reduce anxiety and increase treatment participation.

However, the sheer volume of patients that will likely join the pathway – expected to be upwards of 25,000 annually in the future – as well as a partnership with cloud-based digital referral system Oculo, means GA will become a national hub of data that should prove valuable for researchers.

“It will give us valuable information about patients, especially with regard to quantifying how many don’t adhere to their appointments, how many don’t adhere to their treatment and the reasons why,” Gibbins says.

“It will also help us measure the value of our ‘glaucoma runs in the family campaign’ as it is incorporated throughout the journey with familial risk awareness tracked from stage 1–4.

Glaucoma Australia
Glaucoma Australia's automatic referral pathway

“So we’ll be able to measure the impact that Glaucoma Australia has and also the impact on the patients who are going through our journey, as opposed to a control group.”

Gibbins expects the pathway will be fully automated by December, and while she eventually aims to recruit every Australian with glaucoma to the program, she says capturing 20,000 people by the end of 2022 would be a realistic short term goal. Yet in order to achieve this, she says social stigmas and habits will need to change.

“There’s a social element to it, particularly because many people are from an older demographic where health issues have traditionally been a private matter, whereas now we’re looking for early intervention,” Gibbins says.

“If I speak to a 50 or 60 year old who’s just been diagnosed, they are usually a lot more open and say ‘I’d better tell my family’, whereas if you speak to an 80 or 90 year old, the may not feel as comfortable sharing health news and not want to ‘worry them’.

“So there are definitely other opportunities there for Glaucoma Australia in the coming years to produce videos on how to share health news in, for example five different ways, and the patient could then even get their family to watch the video if they still don’t feel comfortable.”

The ultimate goal

Gibbins describes herself as a ‘change management CEO’. Yet, while that has shaped her own proactive approach to improving glaucoma outcomes for Australians, she has also been delighted by how open the ophthalmic profession has been to both considering and adopting different ideas and strategies.

“Considering it’s a new, innovative approach it’s been extremely well-received. People have been very positive and I’ve found pretty much every appointment I’ve made has said ‘let’s start looking at new ideas’, so it’s been going really well,” Gibbins says.

“We might not have a cure, but there's no reason not to have a proactive approach that’s clearly outlined and have everyone buy into it. We have the potential in Australia for people diagnosed with glaucoma to never go blind.

“It’s an amazing, achievable goal and to eventually be a part of something like that would be a dream.”

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