Are you dreaming of the day when your friendly affordable robot care-assistant with the best of bedside manners helps you to complete a diabetes self-check and comfortable treatment session including medication; perfected to suit your current biological circumstance, all without leaving your home, while sending an automatic confidential report to your expert clinical support team; knowing that you can speak with a team member via tele-video connection at any time?
In technical terms, and somewhat less perfected, this is achievable now. In reality there are many changes to make, many obstacles to overcome before such a telemedicine service can become viable. It is though part of a race to get health care chronic disease management and burgeoning budgets under control. The tide is coming in and may overwhelm our defences before we can get the new health technology ramparts built.
‘At the close of 2009, the Australian population stood at around 22 million with a growth rate of 2 per cent a year. Some forecasters are predicting this will reach 27 million by 2020 but this is a subject for debate, given earlier fluctutating trends. And 25 per cent of the population was born overseas. These are predominantly from Europe (the majority Anglo-Celtic), but since the late nineties the numbers and percentages from Asia have increased. Many overseas-born and Australia-born people also emigrate – departing permanently, each year. The net effect is a topic of constant study and concern, the more recent immigrant figures having been boosted by educated Australians seeking shelter from the worldwide recession after their better-paid (versus Australian) international jobs in London, New York and elsewhere became casualties.’
Telemedicine, also known as telehealth, is a topic widely discussed as a means of monitoring and maintaining care for, people with diabetes. The subject is as complex as Type 2 Diabetes Mellitus (T2DM) itself. In the respective individual and merging realms of clinicians and technologists, Information Communications Technology (ICT) research primarily serves and speaks the language of scientific communities. The T2DM patient community in common with many of us is easily deterred from reading or trying to understand what (with respect) appears to be confusing “techno-babble.”
All of us have cultural norms that determine our ability to communicate. The world of advanced technologies now embracing health care is effectively producing its own language; the appropriate thesaurus has yet to be published but I have little doubt that will come fairly soon – but it will have to be an e-thesaurus to cope with the pace of change. Imagine the day when a web-based thesaurus dedicated to diabetes care is easily accessible! “MakingSenseFoRUs” I hope!
A few years back in Colorado I liaised with a small computer systems design company whose undoubtedly clever principals were forever embarking upon the next step of refinement. They were designing unique biometric identification systems that would support physical access controls for sensitive facilities such as laboratories and at-risk government buildings. Perfectionists as they were, they frequently fell short when it came to conducting a conversation with non-technical people.
The ever-changing health care environment presents us today with a similar picture. Developments in diabetes care and treatments initially appear in reports heavily laden with terminology that the patient will not comprehend and in most cases does not need to know. In the process, the mass media will pick up on the “spicier” aspects of the development; homing in on anything that lends itself to hype and sensationalism, often reducing the discovery to headline grabbing clips.
Health care industry publications will usually offer a more informative account; but diabetes patients looking for quality of life help and hope are generally better served by website diabetes care advocates such as David Mendosa. You may think well I am bound to say that as a guest author on his website – but be assured, as a researcher engaged in coming up with ICT solutions for disadvantaged T2DM patients in remote parts of Australia, I too need to rely upon good verifiable sources that are free of unnecessary techno-jargon. Moreover, it is always good to be able to trust experienced judgement about how long it will be before a new product or care development will be available – and affordable. “Cake tomorrow” is not much good if you need bread today.
There is though, justification for real optimism. Those of us charged with realistically translating the very good work of solutions developers into manageable text must however resist the temptation to get overly and prematurely enthused about advancements in this field.
Greatest challenges; greatest rewards
In future articles I will discuss telemedicine developments, with a special focus on systems of health care service that will benefit disadvantaged patients, their primary care providers and families who live in rural and remote areas. Most particularly I will be discussing the value of telemedicine for members of the diagnosed and undiagnosed Indigenous community. Australian Aboriginal people at risk or having T2DM share many similarities with Indigenous tribes and groups across the world. Native Americans and the Inuit people as well as Aboriginal peoples of Australia and Canada share common biological vulnerabilities.
Now, before the non-indigenous reader decides, this is not for me, I ask you to think again, and read on. One of the reasons that diabetes has reached epidemic proportions globally is that society has failed to share knowledge of the threat and recognize the danger on the horizon. Ironically the viability of entire health care systems in the developed world is under threat from the “ignorance of wealth.” Humane health care principles demand that we respond to chronic disease regardless of the status of the patient; but our response has not proved effective if we measure this by growth of diagnosed T2DM patients. The disadvantaged populations that demonstrate the higher incidence of T2DM may hold the key to defeating the worst effects of chronic disease. But prioritizing these populations is also the most difficult challenge of all because of the many accompanying obstacles, beginning with cost. It has been so much easier and relatively less expensive for providers to “connect” with urbanized educated (and insured) people who can easily understand and comply with medical advice; who can manage to meet health care costs; who can independently gain access to primary care, to clinics, to hospitals – yes?
Western Australia sampling as an illustration
Western Australia’s remote area Indigenous T2DM patients are disproportionately at risk of developing chronic diseases compared with non-Indigenous people living in or close to urban areas. Western Australia has the largest land area (2,532,400sq km = 977,765 sq. miles) of any Australian State or Territory. Its coastline of 12,500km (7,767 miles) amounts to 34% of Australia’s total coastline. The State’s capital, Perth, contains over 72% of Western Australia’s population. Principal health care support facilities, medical treatment and pathology testing services are located in cities and towns. Rural and remote communities rely upon thinly-spread, mobility-dependent and sometimes inaccessible, primary care resources. They also rely on a relatively small cohort of Aboriginal Health Workers who are of Indigenous ethnicity. Dialysis facilities for example may be two days away by road – if the patient has access to a motor vehicle. These resources are constantly over-stretched and ill- equipped to manage an infinite demand for health care interventions, adverse factors compounded by comparably weak communications infrastructure.
One Australian study reported that for every Australian diagnosed with diabetes, there is one undiagnosed. A year 2008 estimate of diabetes in Western Australia indicated that 6.6% of people over 25, i.e. more than 90,000 adults, were diagnosed as living with diabetes in the state. So, on the basis of the undiagnosed estimate, WA may have as many as 180,000 people with diabetes. The population in this big state is small – 2.24 million; so roughly 8 per cent of the total population have diabetes, remembering that this does not include a count for those under 25. Unfortunately a large number of those who have diabetes live at a considerable distance from the hospitals. They and/or their providers have to negotiate extremes of terrain and climate to receive care.
Diabetes WA reports that in the 2007/08 financial year, 12.37% of all hospitalizations in Western Australia, i.e. 95,775 admissions, involved patients with diabetes, whether as a direct or associated condition. Indigenous people were seven times more likely to be hospitalised for all causes; they were on average 14 years younger; and eight times more likely to be admitted due to a diabetic condition, compared with non-Indigenous people. The proportion of people with diabetes increases with decreasing socioeconomic position.
Getting ready for diabetes device and communications technology
Here is another complication, and added challenge: For many of these patients, English is not their first language. Maybe not even their second or third. “Remoteness” is a relativity term that we in our urban setting use yet it means little to those living in rural and remote areas. Culturally, socio-linguistically, and pragmatically we are on a different planet. (Apologies for that sudden mouthful of long words). So, let’s say that we are able – as we hope – to bring broadband connectivity, point of care testing and monitoring devices into these communities. How will they use them? What do we have to consider before venturing into their lives with our wonderful concepts? How do we engage, partly through machines, a culture that has been more than 30,000 years in the making before westerners ever made contact? What behavioral norms and variables must we design into our communications interfaces? Some of the answers and strong indicators will come in upcoming articles.
At this point I will return to my assertion that ignoring, neglecting priorities for disadvantaged people is ultimately harming all of us. Imagine living in a neighborhood where healthcare is rationed; budget driven. Neighbors are able to prioritize availability of certain health care services for all, while accepting that some services will not be available, and inevitably some will suffer. Given the influence of variations in age and wealth, and if most of those with a vote are under 35, diabetes could be placed well down the list. Over time the consequences of that will impact on other services and rationing will eat further into the financial viability of the system, affecting all services. OK this is unimaginable, but many factors are at play – too many to mention now – that will definitely impact diabetes care. The effort to develop systems that will overcome cultural barriers gives us an attractive prospect- the opportunity to deliver user-friendly efficient and attractive – even entertaining - technology that teaches and supports the patient, including diagnosed children of a very young age; people of diverse cultures; of differences in intellect; differences in care needs.More on this in future articles – meanwhile we are more than happy to hear from any visitor who can offer descriptions of their diabetes care communications experiences in the technology design context. What have you learned that you would like to see embraced, or avoided, in this transitional revolution as we move care devices and communications closer to your home environment?
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