Tele-eye health teams up with EHRs for diabetes-related blindness in Aboriginal communities

The University of Melbourne and the Fred Hollows Foundation have launched a $3 million partnership to introduce low-cost eye exams for indigenous Australians using proven telehealth technologies and protocols.

The Telehealth Eye and Associated Medical Services network (TEAMSnet) aims to increase the access of people with diabetes to appropriate eye care to reduce the risk of vision loss and blindness and to improve care for people in remote areas of Australia who are living with other chronic conditions such as heart disease.

While there are several other pilot projects aiming to do similar work, what this program will include is a clinically validated protocol with quality assurance that has proven to work not just for diabetes-related blindness but for age-related macular degeneration, hypertensive retinopathy and glaucoma, according to the project’s lead, Sven-Erik Bursell.

It will also use Associate Professor Bursell’s Chronic Disease Management Program (CDMP), an open source software program that actively incorporates eye care management into mainstream chronic disease management functions such as electronic clinical decision support, risk assessments, collaborative care planning, nutrition counselling and physical activity coaching.

The software can operate in a mobile health environment using CDMP’s patient portal, and the team is in discussions with Communicare, the WA-based clinical software vendor that specialises in Aboriginal healthcare and which was recently acquired by DCA, to set up an interface between Communicare’s electronic health record and CDMP.

A/Prof Bursell heads the Diabetes Telehealth Program at the Telehealth Research Institute, part of the John A. Burns School of Medicine at the University of Hawaii. He also has a faculty appointment as associate professor at the University of Melbourne and will later this year come to Australia to run the program on a permanent basis.

A/Prof Bursell has been involved in telehealth from its earliest days in the US and started a telehealth program for eye care in Native Americans in 1997. His team at the Telehealth Research Institute has a long-standing collaboration with the US Indian Health Service (IHS), which runs a federal health program for American Indians and Native Alaskans.

Called the Joslin Vision Network tele-ophthalmology program and run by Mark Horton, this program has been providing telehealth-enabled eye care to people living in remote areas of the US since 2000. A/Prof Bursell said that over the past four years, 21,000 telemedicine eye exams have been conducted in 17 US states, which has led to a 51 per cent increase in laser treatments to prevent blindness. The results of the program have revealed that this approach cost less and saves significantly more sight than traditional eye care services, he said.

Native Americans have similar problems to indigenous Australians in both a high prevalence of diabetes and heart disease and in geographic remoteness. The Navajo people, for example, have a population of over 210,000 spread over an area of seven million hectares, and one community of American Indians lives at the bottom of the Grand Canyon, accessible only by helicopter.

“The crazy thing is, especially for preventable blindness and diabetes, across the US and also in Australia only 50 per cent of people with diabetes are getting appropriate eye care,” he said. “Diabetes is still the leading cause of adult new blindness today despite the fact that you have an incredibly effective clinical process for preventing blindness, which is pan-retinal photocoagulation, which reduces the risk of vision loss to less than five per cent.

“Diabetes should not be a leading cause of new blindness today, and the use of telehealth really is something that can break that logistic logjam of patients getting to see specialty care at the right time.”

One of the major problems with diabetic retinopathy is that vision loss is asymptomatic, with patients seeing perfectly well until they suddenly go blind. There is no gradual progression of vision loss, so patients are very reluctant to see an eye specialist and undergo uncomfortable procedures such as eye dilation.

“With telehealth, we don’t use bright lights, we don’t have them dilate their pupils, it takes about 10 minutes to get their eyes done, and boom they are out of there,” he said. “They have their bloods drawn, they have their eye images done.”

As part of TEAMSnet project, non-mydriatic retinal cameras will be purchased and sent to participating communities, with Aboriginal health workers taking the images. These will be sent via a secure virtual private network to a team of trained readers at the Centre for Eye Research in Melbourne, who will do a retinal assessment and relay an encrypted PDF report back to the originating site.

“They open it up and the GP or the nurse practitioner has a look at the report and makes the final decision on how to manage that patient, whether they need to be referred to eye care or whether they are doing fine and they just need to come back next year,” A/Prof Bursell said.

One of the benefits for community health centres is cost avoidance. “You don’t have to send every person with diabetes to see an ophthalmologist every year as defined by best practice guidelines, yet at the same time we are sending more people to the ophthalmologist who actually need their care, and we are not clogging up the ophthalmologist’s schedule with people who are doing fine. The wait times for specialty care are then reduced.”

The technology is reasonably simple and there are other projects underway, such as the Remote-i tele-ophthalmology trial being run by the Australian eHealth Research Centre at the University of Queensland, but for A/Prof Bursell, the difference is the clinically validated protocol and the open source, license-free, software for chronic disease management that he will be bringing.

“The real issue that we face with anything in telehealth, be it tele-ophthalmology or tele-dermatology, is that you need to have a clinically validated protocol with quality assurance to support it on the back-end,” he said. “That’s what we have. It is a clinically validated protocol, not only for diabetic retinopathy but for other ocular diseases like age-related macular degeneration, hypertensive retinopathy, glaucoma – we cover the whole gamut.

“The way I look at this is that we use the eye imaging as a foot in the door. It is a very powerful education moment. For the first time, the patient is actually seeing pictures of their own eye on the screen, so our Aboriginal health workers are trained to talk to the patient and discuss with them healthy lifestyles, good eating, good exercise, managing your blood glucose – all of that good stuff, to help them better manage their own diabetes.”

CDMP, which A/Prof Bursell developed himself, will help Aboriginal health workers within the community to manage patients both for cardiovascular disease and diabetes. The CDMP can be integrated with electronic health records to provide a large amount of new data that normally can’t be captured on an EHR.

“Your traditional electronic health record systems have nowhere to put that home or remote monitoring data,” he said. “This is not certified laboratory data – this is a patient saying ‘gee I feel crook today’. There is no way they can put that in a longitudinal health record and if they want to do it, it costs too much money and [the vendors] are just not going to do it.

“The advantage is that Communicare is a small EHR so you’re not going through a whole load of administrative functions just to get to the right person. Something like the CDMP actually provides value because it augments the function of the electronic health record, which is really procedure-based rather than outcome-based.”

A/Prof Bursell believes that where telehealth can really make an impact is in being able to facilitate a move to value-based healthcare. “We can provide the disease registries for all of these different conditions because we are monitoring from the home and in the community. We collect a lot of that information that can be used to assign value to improving clinical outcomes.

“It is not just that the patient does better with their medications – why does the patient do better with their medication? You can start characterising patient populations and medications and symptomology, and figure out what the best way of doing things is.”

The program will initially be trialled in four communities in the Northern Territory, with the hope of rolling it out to more. The TEAMSnet team is currently selecting the sites, after which ethics approval will be sought at each individual community.

“We’ll set the model and this is both the model in the healthcare service delivery as well as the model in data sharing and the model in quality assurance and the model in setting up appropriate referrals to speciality care,” he said. “Once you’ve got that set up, it becomes very easy to translate that model to another community or another hospital. The learning curve time is significantly decreased.”

The University of Melbourne and the Fred Hollows Foundation are working in collaboration with the Aboriginal Medical Services Alliance Northern Territory (AMSANT), the Centre for Eye Research Australia and the University of Sydney Clinical Trials Centre. The participating communities will also be partners in the program. Additional funding has come from the National Health and Medical Research Council.

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