FAT FARM For the past

by francine Hardaway on March 16, 2004


For the past few months, I have been working with Byron Davies, a researcher in medical informatics at Arizona School of Health Sciences, under a grant from St.Luke�s Health Initiatives to hold focus groups for diabetes patients, their providers, insurers, and allied health professionals on how technology can help people manage their diabetes more effectively. We went in with a pretty clear idea that technology can help (Byron�s background is artificial intelligence, mine is IT); we just didn�t know where.

Like most researchers, we opened a larger can of worms than we expected. The last of the three groups, held yesterday on the Gila River Reservation, was daunting, and left me feeling that technology is a very small piece of a very large puzzle: why don�t people take personal responsibility for their health? We can blame it on fast food restaurants, or � in the case of the Gila River Indians � government supplied surplus foods, but ultimately we have to blame it on ourselves.

In the native American community, this puzzle has more pieces than in the community at large, but the finished picture is still the same. The dominant image we took away with us was the beauty of the desert interrupted by the Reservation�s large new Dialysis Center with a huge Coke machine out front. But that�s not very different from Home Depot with the same machine out front, or Costco with its hot dog vendors, or Jack-in-the-Box � it�s just slightly more ironic.

As in the other groups we held, patients stressed that compliance has to be simple; the more medications a person is on, the more difficult it is to get them to comply. And they must be really motivated, for which direct one-on-one interaction is very important. One woman said that she denied her diabetes until her daughter told her �I want you to be around for your grandchildren,� and then a light went off in her head and she took control.

On the reservation, so near the sprawling Phoenix metropolis and made �wealthy� by the casino money, home visits are key: many people have transportation issues that prevent them from getting to the clinic, some still don�t have phones or want to use them, and older people are hesitant to use new technology, intimidated by computers or even allopathic medicine itself.

One woman, who learned she was diabetic three years ago, went through a year of denial even though she works at the health clinic. She said the hardest thing for her was to integrate modern medicine with traditional beliefs, and that many people on the reservation believed they could control their diabetes by drinking greasewood tea. She drank the tea occasionally herself, and thought it worked.

The participants in the group thought as many as 60% of the 18,000 adults on the reservation were diabetic � even young ones. Many of them don�t do anything about it, even though they are told their glucose is high. On the reservation, glucose levels of over 250 are common, and the health professionals often see people with glucose levels of 600 who are still walking around. Apparently, their bodies adapt to the high values so they can function, and they don�t realize permanent damage is occurring. As one participant put it, �people don�t realize that they�ll be hooked up to a machine in ten years, and by then they are resigned to it. We have a wonderful education center out here, but people don�t take advantage of it.�

So, after all, the issue isn�t what technology to use �it�s why don�t people stop self-destructive behavior? On the reservation, education may be part of the problem (some native Americans still think that because everyone around them has diabetes, the disease is contagious), but lack of motivation seems to be the biggest obstacle. Younger people don�t want to be monitored and have adults tell them what to eat; older people think diabetes is inevitable and they might was well just wait for it.

So remote monitoring won�t be a panacea for those who don�t have easy access to health care, unless they have first made the decision to control their diabetes. For those who do choose to control their diabetes– a self-selected group, similar to those in the population at large who diet and exercise– technology becomes really useful as a tool.

And also ontrary to what we originally supposed, the more �out there� and futuristic a technology was, the more people seemed to think they would like it. High on the list were ways to monitor blood sugar through a breathalyzer or through the skin; higher still was the implantable artificial pancreas.

So my takeaway from all this is the same as it always is: in life, you play ball with the people who show up. When someone �shows up� for their diabetes, even on the Gila River Reservation, they will go for the technological fix.

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