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Shifting the dial on diabetes-related blindness

Two years since the KeepSight launch, Insight asks what measurable difference this once-in-a-generation program is making to those living with the diabetes.

Two years ago Diabetes Australia CEO Professor Greg Johnson revealed half of the 1.3 million (now 1.7 million) Australians living with diabetes weren’t getting regular eye checks – meaning eye damage was often identified late when treatment was less effective and more costly.

Johnson shared the alarming statistic at the official launch of KeepSight, a program led by Diabetes Australia and Vision 2020 Australia, with the backing of several organisations like Specsavers, Centre for Eye Research Australia (CERA), Oculo, Optometry Australia and RANZCO. Together, they aimed to obliterate that statistic with the implementation of a systematic, wide-scale recall and reminder system for diabetes patients.

KeepSight has been hailed as a “once-in-a generation opportunity” to dramatically increase eye exam rates and reduce diabetes-related vision loss and blindness in Australia. It’s hoped the model can emulate the success of an initiative in the UK where diabetic retinopathy is no longer the leading cause of blindness in the working age population.

Diabetes Australia CEO Professor Greg Johnson and CERA deputy director Associate Professor Peter van Wijngaarden. Image: Georgia Quinn

Federal Health Minister Greg Hunt officially launched the program to the eyecare sector in October 2018, followed by a public launch in March 2019. The Australian Government provided an initial $1 million grant for year one, matched by a commitment from Specsavers of $1 million a year for five years.

Now, nearly two years since launching and with almost 140,000 registrations, those behind KeepSight are now aiming to further integrate it into the practice workflow of Australian eyecare providers. Soon, they also hope to monitor aspects of diabetes eye health in near-real time, something that hasn’t been achieved in any other country.

180 diabetes-related decisions a day

Diabetes Australia estimates around 1.7 million Australians are living with diabetes today, and with an additional 280 people developing diabetes every day, this figure is estimated to grow to 2.45 million by 2030.

All Australians with diabetes are at risk of developing diabetic retinopathy (DR) and there are around 100,000 Australians with vision-threatening DR.

CEO Professor Greg Johnson says, concerningly, this number is expected to double by 2030.

“On average one in three people with diabetes will develop some form of diabetic eye disease which equals about 423,000 Australians,” Johnson says.

Month-to-month KeepSight registrations and re-registrations through Specsavers practices.

“Evidence shows that early detection and timely treatment can prevent the majority of diabetes-related vision loss but, until now, the lack of a coordinated and systematic approach means a significant proportion of Australians with diabetes were not having eye examinations when required. This is despite ample existing capacity in optometry, ophthalmology and general medical practices to support early detection and treatment.”

Diabetes Australia points to the significant daily burden on people with the disease as a potential reason for missing regular eye tests. ‘Heads up on Diabetes’, a campaign launched as part of National Diabetes Week 2020, painted a picture of how every minute of the day, people with diabetes face decisions, thoughts, worries and fears about their condition and the future impact it may have on their health.

“It is estimated that people with diabetes face up to 180 diabetes-related decisions every day. That is more than 65,000 extra decisions a year. Combined with busy personal and professional lives, remembering and scheduling regular eye checks can be overlooked or put ‘down the list’ of priorities,” Johnson says, adding that some aren’t even aware they need to have their eyes checked.

The missing link 

Johnson believes KeepSight has the potential to fundamentally “shift the dial” on diabetes-related blindness in Australia.

“Once we know someone has registered with KeepSight, and is getting regular checks, we can focus our efforts on those people who may be at risk of losing their sight because they’re not getting checked,” he says.

“In only two years, KeepSight has demonstrated that a coordinated and systematic approach to preventative and timely healthcare to improve outcomes for people with diabetes can have a real impact.

“We see KeepSight as having the potential to be the missing link that will keep Australians with diabetes more engaged in their eye health care and dramatically reduce diabetes related vision loss and blindness in Australia.”

In the past 12 months, Johnson says there has been a steady and significant growth in registrations by optometrists as a result of efforts to integrate the KeepSight registration process into practice workflow with major providers.

“Eye sector practice workflow integration is key to our continued success. This work will continue in 2021 and Diabetes Australia is keen to hear from provider groups who are interested in working on integrating the program into their existing patient management systems,” he says.

Barriers organisational, not financial 

Vision 2020 Australia and its members advocated for many years for a national diabetes blindness prevention program, knowing much of the vision loss associated with the disease can be prevented with regular eye exams.

CEO Ms Judith Abbott pointed to an international precedent to support Vision 2020’s activism.

Judith Abbott, Vision 2020 Australia CEO.

“A national program in the UK led to marked reductions in diabetic retinopathy and we wanted Australians living with diabetes to benefit from a similar approach,” she says.

Someone with knowledge of the lauded UK program is Professor Peter Scanlon, clinical director of England’s NHS Diabetic Eye Screening Program.

In September 2019, he visited Australia and met with the government and industry to understand how KeepSight was progressing. He shared insights from the UK’s screening program which has been running across England for 10 years.

“When we commenced our program in the UK, there were many late presentations which were difficult to treat and patients losing vision because of these late presentations. But as a consequence of the program, diabetic retinopathy is no longer the leading cause of blindness in the working age group in the United Kingdom,” he told RANZCO’s Eye2Eye publication in 2019.

He believed Australia could learn from the English system.

“What’s required is the sector working together across patient and professional groups, speaking with one voice, and being focussed on achieving the task. This is perfectly feasible within any healthcare system,” Scanlon said.

“It is particularly achievable in Australia where there is a public and private system that has significant investment and so the main barriers are organisational and not financial.”

For the eye health and vision care sector, Abbott says KeepSight complements existing information and reminder systems practitioners provide their patients and, over time, urge the estimated 700,000-plus people with diabetes who don’t receive regular eyecare to do so.

She says Diabetes Australia, CERA and Vision 2020 Australia have worked together on various initiatives over the years to tackle avoidable vision loss, with Professor Johnson and CERA’s deputy director Associate Professor Peter van Wijngaarden long term advocates for tackling diabetes-related vision loss.

“Specsavers has been another important supporter of the program, contributing funds to match investment by government and making changes across their own practises to embed KeepSight,” she adds.

“It’s a diverse partnership, and KeepSight benefits from the range of perspectives, knowledge and networks that each partner brings to the program. KeepSight is also fortunate to have financial support from Novartis – a Vision 2020 Australia member organisation – and Mylan.”

‘I was convinced this should not be happening’

CERA has been involved in the advocacy for KeepSight from its inception – convinced it could make a real difference to the eye health of people with diabetes and prevent avoidable blindness.

Like Abbott, van Wijngaarden wanted Australia to emulate the success of the UK program.

“In 2013, I returned from a fellowship in England where I saw first-hand how effective the national screening program for diabetic retinopathy had been in preventing avoidable blindness,” he says.

“In my first few clinics back in Melbourne I was surprised to see people presenting for their first eye checks with very late-stage diabetic retinopathy when treatment is more difficult and outcomes can be poorer. I was convinced this should not be happening and that our eye health services could do better for people with diabetes.”

Specsavers recall response rates comparing people with diabetes to patients receiving standard recalls.

Van Wijngaarden says Diabetes Australia, as the voice of people living with diabetes and as managers of the National Diabetes Services Scheme – a program that provides health advice and services to 1.4 million Australians with diabetes – was the obvious choice as leaders of a national approach to diabetes eye checks.

CERA researchers have been focusing their energies on the design, integration and promotion of KeepSight.

“One of the most important parts of this has been integrating KeepSight registration in the electronic records of eyecare providers, removing barriers to registration. In the coming months our focus will extend to measuring the impact of the program so that we can clearly communicate the value of KeepSight: first and foremost to people with diabetes, but also to eyecare providers and to funders of the program,” van Wijngaarden says.

He says key impact indicators will include the proportion of reminders that result in return visits to eyecare providers; numbers of registrants; and the impact of health messaging (both targeted, via the NDSS, and mass market messaging) on diabetes eye check activity.

Having established a digital infrastructure to mobilise and to monitor diabetes eye check activity at a national level, he believes they will be well placed to understand the burden of the disease in near-real time.

“In addition, we will have the opportunity to target health messaging to those people who are not having regular diabetes eye checks. This will be a very powerful means of providing targeted support.”

Van Wijngaarden is not exaggerating when he says KeepSight is “an absolutely critical program” for Australians with diabetes, and the nation’s eyecare sector.

“In two years, we have built the digital systems to enable simple registration of people with diabetes and the automated issuing of reminders to registrants. We have developed and refined consumer messaging to engage people in eye checks and we are now poised to measure the impacts of this on adherence to eye checks at scale,” he says.

“As the momentum builds, we will be able to monitor aspects of diabetes eye health in near-real time, something that has not been achieved in any other country. This model of consumer-focussed digital coordination of care has great potential to scale to improve the care of other complications of diabetes and, indeed, of other chronic diseases.”

From the outset, van Wijngaarden says the importance of collaborating with service providers was well understood to ensure any program would work “on the ground”.

“The combined expertise of all the KeepSight partners in advocacy, research and delivering eye health services enabled us to clearly demonstrate the need for KeepSight, the impact it could have and show how it could be delivered successfully,” van Wijngaarden says.

“Equally it was clear that transplanting the English NHS diabetic retinopathy screening program to Australia would simply not work given the differences in the two health systems.”

Significant investment on many fronts 

As the statistics indicate, an increased focus on supporting and increasing access to eyecare for people with diabetes was paramount, prompting Specsavers to step up to the plate.

Professional services manager Ms Naomi Barber says the need for a robust system of communication and collaborative care for timely intervention is suppoted by Specsavers data which shows that, on average, on 30% of patients with diabetes respond to recall letters and reminders within the recommended timeframe.

Naomi Barber, Specsavers.

“As part of the Specsavers transforming eye health strategy, we are committed to collaborating with industry stakeholders to develop sustainable models for preventative eyecare and – our litmus test – to measurably improve patient health outcomes,” Barber says.

“We were certain that an initiative focusing on a systematic series of timely eye health check reminders would be a key element to helping prevent vision loss and blindness in people with diabetes.”

In addition to providing $1 million a year for five years, Specsavers has also invested in developing and adopting a range of systems and processes across its network of around 350 practices in Australia.

Looking ahead, KeepSight also provides a unique framework so that government and care providers have a single view of the eye health of Australians with diabetes. With 280 Australians developing diabetes daily, and the annual cost of its impact estimated at $14.6 billion, Barber says this data is vital to ensuring trends are monitored and eye healthcare groups and providers can continually improve patient care to ensure enhanced long-term eye health for Australians with the disease.

Measuring impact 

KeepSight data shows up to January 2021, more than 137,000 people with diabetes have been registered for the first time onto the portal over the past two years. In addition, Specsavers data show nearly 20,000 patients with diabetes have already returned for their next diabetes eye check and had their reminder renewed.

“Bearing in mind the effect of COVID-19 in 2020 and the impact of the Victorian lockdown on optometric care, this is a significant number,” Barber says. “With 1.7 million Australians living with diabetes, this represents approximately 8% of those Australians being supported with their ongoing eye healthcare.”

As COVID-19 restrictions eased across Australia last year, in November alone more than 16,000 patients with diabetes received eye checks at Specsavers and registered with KeepSight, equivalent to almost 1% of all Australians with diabetes.

Barber says the steady increase in patient volume and percentage of registrations is testament to the systematic approach of developing and integrating KeepSight into the practice network’s standard processes.

“This began at the end of 2018, when changes were made to our practice management software that allowed optometrists to more easily track patients with diabetes to provide baseline data. From here, Specsavers integrated Oculo and then the KeepSight portal directly with the patient management system,” Barber explains.

“These investments have been critical in building a strong registration rate on to KeepSight, and the increase in patient registrations over the past two years has shown that creating a sustainable model for preventing vision loss in people with diabetes comes from integrating systems and streamlining processes.”

Upon KeepSight’s launch, Specsavers aimed to register 200,000 patients with diabetes within two years. As the program’s two-year anniversary approaches, it is close to hitting that target, despite disruption to optometric services due to COVID-19 in 2020. Looking ahead, it aims to register between 80-90% of its patients with diabetes by March 2022.

Rapid recall

Barber contends one of the key opportunities to raise the number of patients with diabetes having their eyes routinely checked was to increase the recall response rate for recommended appointments.

To that end, Specsavers data has highlighted the comparison between the recall response rate for patients with diabetes versus standard patient recalls.

While patients with diabetes have always responded to recall at a higher rate than standard recall response, Barber says the data demonstrates since the launch of KeepSight, the percentage has further increased. In September 2019, Specsavers data showed 30% of patients with diabetes responded to recall reminders within the recommended timeframe, compared to 17% of patients who received a standard recall.

“In the time KeepSight has been implemented, this has increased to 34% of patients with diabetes responding to our recall reminders,” she says.

Patients with diabetes who did not return following a recall now receive KeepSight reminders and don’t fall through the cracks.

“Our data shows that the number of patients with diabetes seen across the Specsavers practice network has increased, from 5.2% of patients in January 2019 to 6.6% in January 2021,” Barber explains.

“In addition, our optometrists have already seen over 17,000 patients with diabetes registered with KeepSight return for an eye health check in the second half of last year, and we anticipate that trend to continue in the next two to three years in accordance with recall timeframes,” Barber says.

With Specsavers committed to funding the program until 2023, how much progress is made in clawing back the statistic – that half of people living with diabetes do not currently receive regular eye exams – will be keenly anticipated.


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