Diabetes Blog – Happy-Medium.net

The May DSMA Blog Carnival topic has required a lot of thought on my part. And to be honest, I’m not through thinking about it yet:

This is a grassroots initiative calling for diabetes data and device interoperability — so that we PWDs have full access to our own data, can share it as we like, and can use on whatever apps or platforms we choose without being locked into some proprietary product from just one manufacturer. For the month of May, we’d like to know:

Why does open D-data & device interoperability matter to you? How might your life improve if open data were the norm?

I originally wrote about this in a story about an interoperability conference I attended back in February.

To me, the problem with “proprietary” software (or “proprietary” anything else, for that matter) is the very ideal of proprietary: To continue sole ownership of and profit from a device, or an algorithm, or something else, forever. Or at least until the next proprietary thing can be developed that will replace the original. By nature, something proprietary is designed to be kept proprietary by its owner not just now… but for generations to come. Never ever shared.

But these companies paid for their product to be developed, right? They should be allowed to profit from it, as much as they want, right? Who am I to suggest they open up their code?

I’m all for profit. I love profit. Proprietary and profit go together like bacon and eggs.

Unless you keep kosher. And there’s the rub with “proprietary”.

Not everyone is the same. Some of the people in the world are blessed with bodies that have fully functioning pancreases. Some are not, and they are People With Diabetes.

Some People With Diabetes are blessed with wonderful insurance plans that pick up a large part of the cost for a new insulin pump, continuous glucose monitor, or test strips. Some are not, and they struggle to afford even the daily insulin they need to survive.

Some people never have to worry about where their blood glucose is headed at any given time. But there are People With Diabetes who deal with hypoglycemic unawareness, something that keeps them from being able to recognize life-threatening lows and treat them in time. For these people, a continuous glucose monitor, the best one they can lay their hands on, is a daily life-saving instrument that they cannot do without.

Some people are lucky enough to have access to world-class healthcare resources, where doctors and nurses can look over them whenever necessary to help them manage those times when they might wind up in the hospital. And some people wind up in the emergency room, waiting desperately for care, because the hospital they have access to still writes down every last statistic about every patient, then manually enters all of that data into a computer, then photocopies the paperwork and files it away in a vault somewhere… instead of accessing a standard system that includes all of the patient’s medical history, their prescriptions and doses, pump and CGM data, and their doctor information, leaving doctors and nurses free to, you know, actually practice medicine.

The thing that profit-protectors fear, I think, is that we’ll suddenly go away as customers the minute they open up their platforms. But here’s the thing: I would still want to wear an insulin pump. People would still want CGMs to monitor their blood glucose. I’m going to need insulin as long as I live with Type 1 Diabetes.

Your customers are not going away, profit-protectors. But… How would the lives of both groups of people described here be changed, if the standard of medical software development was focused on the patient… No—On all patients? What other discoveries (and sources for profit) could be discovered by playing with the rest of the kids in the sandbox and making people healthier?

Understand me: Profit is great… capitalism is a good thing. But not at the expense of any of my fellow People With Diabetes. People trump proprietary every time. But don’t fear, profiteers. Open platform or not, your products, and your customers, are not going away anytime soon.
 
 
This post is my May entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetescaf.org/2014/05/may-dsma-blog-carnival-4/