The fact is, a handful of manufacturers currently have a stronghold on our diabetes data. Their systems collect this vital wellness data for us, but are designed to keep back IT so that we rely on their products solely to access IT, partake in it, or psychoanalyse it. Progressively patients are finding this intolerable, and are FRS up with waiting for the Drug company industry to embracement long-overdue open standards.

I'm a bit controlled with this topic myself, and ready-made it the crux of this year's DiabetesMine Innovation Summit event. And I keep hearing roughly patients who are attractive matters into their own hands.  Peerless of those is West, a thirty-something type 1 software developer who lives in San Francisco and worked at networking companionship Meraki (they coiffe the wifi for Motel 6 and Peet's coffee). In his spare time, he's creating a vane-based "sandpile" and recruiting other tech-grasp PWDs to help him check the code on diabetes data sharing. No kidding!

"The ticker is affianced to you and is performing therapy on you. You have the right to know and hold access to those aesculapian records. But for some reason, pumps and glucose meters don't operate that way. The only direction to get those records is to go through the vendor. I think there's a real ethical imperative here, an ethical wrong," Benjamin says.

Sounds a allot like the ePatient Movement's rally cry, "Gimme my damn data!"

Whether or not you agree that the industriousness is obliged to hand over over your data for free, I guess fewer of US with diabetes would argue that making products more interoperable and data sharing easier is an jussive mood to getting better outcomes from these tools. In else words, we need this connectivity to improve care!

"Every day I seat't get data out of these devices is another Clarence Day that I'm that much Thomas More at adventure," Benjamin says. "The engineering that's available everywhere now makes this stuff as easy as Lego blocks. I've got a program that integrates my pump and metre with my cell phone… Connecting these communication protocols is not hard, information technology's just private."

Just Who is West?

Gum benzoin has written to the FDA, posted a number of discussions some his projects on TuDiabetes, and even tried to enlist the Company for Participatory Medicine to help him gather a team to enter Sanofi's Collaborate/Activate crowdsourcing competition last year — but no one was biting.

FDA brushed him aside, and on the TuDiabetes situation, other members attacked him for being too focussed connected raw information. Atomic number 2 says it was probably a perception come forth: "I think I came off Eastern Samoa an overly techy geek that was just now annoyed.  But I've had diabetes for 10 long time and I find this unsupportable. There's no mode to cross-check to make sure your pump surgery meter is operating aright, or merge with other devices — it's just weird that you can't do that. My point is that base hit is not a feature, especially not with medical records. Safety is public — a unexclusive good."

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Benjamin's actually a Young Tee shirt native who was diagnosed at age 21 piece studying euphony at Arkansas' Harding University. He intended music to be his life, but discovered an aptitude for computing and at length got a dual level.

After the diagnosis gain ("I spent a span of invalid days in the infirmary") he went to an endocrinologist in Immature Rock and roll, AK, who trained him on syringes, but switched him to an insulin pump within a year, citing pumping as the Gold Orthodox of care.

"At the time I kind of thought someone, somewhere would make software that would model my metamorphosis — since diabetes is all about metamorphosis — and I'd be fit to look at the information and see how my pancreas was behaving. I would function that data to respond with therapeutic decisions… I was very apace disenchanted," he says.

Alternatively, he started writing down his blood sugars connected line cards, which he was soon drowning in. This turned him off logging entirely for several years. Without proper information tracking, his glucose control got all unsuccessful of whack. "I actually went to the hospital few times," he says.

He realized helium could manipulation the principles from his IT work to "go rogue" on creating the diabetes information connections he needed.  "We know how to set up a network thusly that it works for all. We may not have a huge development team (about 6 people), merely we have a web-based management solace that anyone can forecast out, or they can share a link with others to see information technology out."

He has connections with data miners through with his father, formerly with Lawrence Livermore labs who now works at AT&T nonindustrial analytics and prediction computer software. And Benjamin's brother Nathan, who's finishing heavenward a grad degree in computer engineering, is also knotty. He's working on firmware for the Beaglebone — an "open board iPhone" that lets developers form accessories. "Nathan plugged in a USB with all my diabetic cogwheel. I crapper send an SMS message and IT'll attach one of the devices to the cyberspace. You don't need especial vendor support; you can just add other devices!" Benzoin says.

Little Help from Above

Benjamin queried all the starring pump and meter companies to grant open access to their communication protocols (look-alike the substance abuser manual for programmers). So far, only JNJ LifeScan has been really cooperative. Medtronic has been peculiarly resistant, which frustrates Benjamin as a Medtronic pumper.

One guy he's collaborating with, Will Johnson in Berkeley, California (creator of DUBS), has apparently developed a tool for glucose predictions that could be a boon to patients.

"We've got these predictive algorithms in order to get over — we're exactly waiting for the data," Asa dulcis says.

As an example: one "hacking" project they're workings along is using the CareLink USB cling like a remote control, to download data and perform custom analysis, and and then create a therapeutic be after for the succeeding 6 hours, taking into consideration your plans to eat Oregon utilisation. Wow!

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Several projects Benjamin has running simultaneously include creating firmware to run on Beaglebone (an iPhone stand-in); collaborating on a information mining effort known as DUBS (Diabetes Understanding By Feigning); creating Insulaudit, a Python library that tries to accumulate information from many devices; and a "Decoding CareLink" project that uses the CareLink USB stick the like a remote control to direct the pump and download data.

It turns out Medtronic actually markets its own remote control device, but the one Benjamin is crafting would have fewer buttons, more functions, and be to a greater extent customizable by the user.

Along the ethical argument over data property rights, Benjamin provides this link to a geeky simply relevant presentment on "the coming civil war over general purpose computing."

As a touchpoint, I asked respected diabetes technology guru Scott Hanselman about Benjamin's work out (atomic number 2 actually tilted ME forth to the storey!). He simply says that what Benjamin is doing is "super innovative."

Diabetes Tech Hackers Wanted!

In short, Benjamin is looking for more collaborators to reach auditing these devices transparent. "The only way I know how to do this is to attain a subroutine library that can buoy be match-reviewed. We pauperization collaborators and/or vendors to open documents to protocols."

"We need coders, IT trouble-solvers, documenters — and vendors who are really excited about innovation.  You don't let to be a professional developer — we're looking for anyone who's good at solving technical school puzzles. As soon as we get the data decoded, we volition need to know how to program the visualisation. I would take exception your readers to help me design the perfect pose of visualizations," he says, adding that Glucosurfer might provide one redemptive example.

On the vendor side, Hanselman believes that opening protocols will single come Eastern Samoa a outcome of market pressure. "If the keep company wants to maintain it nonopening, then let folks stop purchasing their stuff," he says.

"In other row, we patients (their customers) need to put pressure connected these companies to play fair?" I asked.

"Yes, I agree that pressure makes the difference — 100%," Hanselman writes back.

Interested parties throne contact Benjamin West here.