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A Portable Quality of Life for People with Diabetes?

By David Forbes From Western Australia

Posted On: Jan 8, 2010

The last Monday of December 2009 was a public holiday in Australia. Calm, inviting turquoise, and royal blue waters of the Indian Ocean. Waves splashed the white sandy beaches, north of Perth, Western Australia, a few minutes' drive from my home. Busy with families continuing their Christmas fun. Kids of all ages surfing, laying flat out on boogie boards.

Memories of crispy white past Decembers, close to the foothills of the Rockies, were fleeting. The temperature before noon today was 37.5 degree Celsius -- 99.5 degree Fahrenheit --climbing to an expected 40 Celsius -- 104F! The ocean seemed much gentler than on Christmas morning, stirring reminders of past vacations in the Mediterranean. Then, slam! In treacherous mood, the seas unleashed a sudden, rapid, and powerful surge of energy, sucking back the sand from under our feet, and then charging back in with a forceful five foot rise in the wall of water. From then on, much more caution was necessary. We could still enjoy ourselves, but not without more vigilance, and not without keeping some of our physical energy in reserve. Thankfully Australia's volunteer Surf Rescue team was there with ever watchful eyes and readiness to respond.

‘Aussie Fact: Australia has ten deserts, the largest known as the Great Victoria Desert - in Western Australia - which covers 5% of the country, just under 135,000 square miles.’

Looking along the long expanse of sandy beach I wondered -- "How many people here are able to take advantage of such a rewarding environment in spite of having to cope with type 2 diabetes mellitus -- which through my repetitive research activity, I conveniently label T2DM?" There was no way to find out by observing a mile long sprawl of perhaps 1,000 people, some in the sea, the others playing or resting on the sands. Nor would there have been a credible way to find out how many T2DM sufferers would have liked to be there, sharing the pleasures of the beach and surf, but who could not be there for fear of an inability to manage personal health needs associated with T2DM.

Among those diabetics personally known to me, I cannot think of one who would not have been there had the opportunity arisen, because in most instances these are people who always seem to be in control of their lives. People who for the most part revealed that they have diabetes only because we had talked about my research commitment and they volunteered that information by way of recognition of its potential worth. What about all the others -- the many I do not have a connection with? I would like to know more about them.

Simply described, I am seeking a way to bring the advantages of convenient primary care technology to the most disadvantaged members of a specific population. A major goal is to reduce the number of instances when T2DM patients or newly diagnosed T2DM sufferers require hospitalization.

What if the disadvantaged people of this world are culturally as well as physically distant from the highly educated professional medical and health care community? The communications gap; the logistics challenges and the bridge to better health present daunting prospects. As with that sudden turn of the ocean, individuals initially become more vigilant after diagnosis or perhaps a related health scare; but there is no Surf Rescue equivalent for T2DMs readily to hand when a slip in vigilance and care occurs. The closest response resource is self-management knowledge, point of care devices such as the glucose meter, a blood pressure cuff and prescribed medication in the right dosage according to circumstance. For the disadvantaged, maybe 100 difficult terrain miles or more from the nearest health clinic, the threat is multiplied, the quality of life is poor and the self-management principles proclaimed by clinicians seem piously idealistic -- and at that moment, unrealistic.

In future articles I hope to illustrate the exciting prospects stemming from programs, projects and trials in which telehealth, aka telemedicine, delivers health care support to T2DM patients and their primary care physicians, enabling them to safely and confidently manage personal health issues without frequent travel to clinics and hospitals. The research activity is phenomenal in its scope and dedication and there is reason to be optimistic -- portable care on the beach? In the near future, yes.

There is however one important dimension deserving of the greatest priority, yet it is too often invisible, perhaps unintentionally, or in some cases deliberately -- the patients' perspectives. That is one reason why David Mendosa's website is so valuable. If we take one aspect of a T2DM patient's outlook, most especially those who are in rural and remote places, or who are exceptionally self-reliant, we recognize that stress too often accompanies the discomforts of T2DM. Yet we also know that many clinicians and researchers identify stress as a contributory adverse factor affecting illness and recovery. This has to be one significant target in the process of introducing new technologies to health care -- monitoring devices -- machines and communications systems that convincingly simulate the best of bedside manners. How do we get there from here?

It is tempting to be reassured when reading research journals that describe the global drive toward 'patient-centred care' and 'self-management.' These terms are bandied about by various sources. In an ideal world we could assume there is to be a 'bottom-up' patient-driven adoption of new healthcare policies, empowerment of consumers through Information Communications Technologies (ICT). There is little evidence to support that expectation; more evidence to suggest that these terms cloak the reality of budget limitations. This is where those patient perspectives come in. The T2DM and type 1 diabetes patient are a veritable memory store of quality of life information that if 'data-mined' will offer longer term solutions for the design of really effective telemedicine support. Rather than limit study of the T2DM patient and the clinical outcomes of random trials, why don't we ask more, increase the scope of, questions of the patient?

We would like to hear from you. Tell us what you think; how we should impress upon the many professional stakeholders that YOU have the key to successful intervention systems for the future. We know that there are those more than ready to listen.

Before closing, let me give an example of the need to learn from the patient. Australia's indigenous population represents a culture reaching back more than 30,000 years; with more than 300 native dialects spoken. In the same way that those who care to learn have come to respect the spiritual culture of the Native American, and to understand that socio-cultural communications will vary according to different groups, the Aboriginal and Torres Islander people of Australia represent an opportunity to learn for the greater benefit of all. To do that we have to learn before we can teach. The Native American and the indigenous First Australian share the added disadvantage of being at higher risk of diabetes associated diseases than many other ethnic groups.

Those number crunching budget people; the politicians' applying finance-weighted theory to policies; and those of us who are relatively able to easily engage health care services -- are not where the best solutions will be found. If we can overcome the worst case condition -- distance, terrain, climate, cultural, educational, and financial disadvantage, the rest of us gain; everyone wins.

Not so the other way around.

But the currency is not handout dollars -- it is knowledge; and then committed application.


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