The fact is, a handful of manufacturers currently have a stronghold on our diabetes data. Their systems collect this vital health data for us, but are designed to withhold it so that we rely on their products exclusively to access it, share it, or analyze it.

More and more patients are finding this intolerable, and are fed up with waiting for the Pharma industry to embrace long-overdue open standards.

I'm a bit obsessed with this issue myself, and made it the crux of this year's DiabetesMine Innovation Summit event. And I keep hearing about patients who are taking matters into their own hands.  One of those is Benjamin West, a thirty-something type 1 software developer who lives in San Francisco and works at the networking company Meraki (they do the wifi for Motel 6 and Peet's coffee). In his free time, he's creating a web-based "sandbox" and recruiting other tech-savvy PWDs to help him crack the code on diabetes data sharing. No kidding!

"The pump is attached to you and is performing therapy on you. You have the right to know and have access to those medical records. But for some reason, pumps and glucose meters don't operate that way. The only way 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 lot like the ePatient Movement's rally cry, "Gimme my damn data!"

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

Whether or not you agree that the industry is obliged to hand over your data free of charge, I think few of us with diabetes would argue that making products more interoperable and data sharing easier is an imperative to getting better outcomes from these tools. In other words, we need this connectivity to improve care!

"Every day I can't get data out of these devices is another day that I'm that much more at risk," Benjamin says. "The technology that's available everywhere now makes this stuff as easy as lego blocks. I've got a program that integrates my pump and meter with my cell phone... Connecting these communication protocols is not hard, it's just secret."

Just Who is Benjamin West?

Benjamin has written to the FDA, posted a number of discussions about his projects on TuDiabetes, and even tried to enlist the Society 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 site, other members attacked him for being too focused on raw data. He says it was probably a perception issue: "I think I came off as an overly techy geek that was just annoyed.  But I've had diabetes for 10 years and I find this intolerable. There's no way to cross-check to make sure your pump or meter is operating correctly, or merge with other devices — it's just weird that you can't do that. My point is that safety is not a feature, especially not with medical records. Safety is public -- a public good."

Benjamin's actually a New Jersey native who was diagnosed at age 21 while studying music at Arkansas' Harding University. He intended music to be his life, but discovered an aptitude for computer science and eventually got a dual degree.

After the diagnosis hit ("I spent a couple of bad days in the hospital") he went to an endocrinologist in Little Rock, AK, who trained him on syringes, but switched him to an insulin pump within a year, citing pumping as the Gold Standard of care.

"At the time I kind of thought someone, somewhere would have software that would model my metabolism — since diabetes is all about metabolism — and I'd be able to look at the data and see how my pancreas was behaving. I would use that data to respond with therapeutic decisions... I was very quickly disenchanted," he says.

Instead, he started writing down his blood sugars on note cards, which he was soon drowning in. This turned him off logging completely for several years. Without proper data tracking, his glucose control got all out of whack. "I actually went to the hospital few times," he says.

He realized he could use the principles from his IT work to "go rogue" on creating the diabetes data connections he needed.  "We know how to set up a network so that it works for all. We may not have a huge development team (about 6 people), but we have a web-based management console that anyone can figure out, or they can share a link with others to figure it out."

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

Little Help from Above

Benjamin queried all the leading pump and meter companies to grant open access to their communication protocols (like the user manual for programmers). So far, only JNJ LifeScan has been very cooperative. Medtronic has been particularly resistant, which frustrates Benjamin as a Medtronic pumper.

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

"We've got these predictive algorithms ready to go — we're just waiting for the data," Benjamin says.

As an example: one "hacking" project they're working on is using the CareLink USB stick like a remote control, to download data and perform custom analysis, and then create a therapeutic plan for the next 6 hours, taking into consideration your plans to eat or exercise. Wow!

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 more customizable by the user.

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

As a touchpoint, I asked respected diabetes technology guru Scott Hanselman about Benjamin's work (he actually tipped me off to the story!). He simply says that what Benjamin is doing is "super innovative."

D-Hackers Wanted!

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

"We need coders, IT problem-solvers, documentors — and vendors who are really excited about innovation.  You don't have to be a professional developer — we're looking for anyone who's good at solving tech puzzles."

"As soon as we get the data decoded, we will need to know how to program the visualization. I would challenge your readers to help me design the perfect set of visualizations," he says, adding that Glucosurfer might provide one good example.

On the vendor side, Hanselman believes that opening protocols will only come as a result of market pressure. "If the company wants to keep it closed, then let folks stop buying their stuff," he says.

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

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

Interested parties can contact Benjamin West here.

Disclaimer: Content created by the Diabetes Mine team. For more details click here.

This content is created for Diabetes Mine, a consumer health blog focused on the diabetes community. The content is not medically reviewed and doesn't adhere to Healthline's editorial guidelines. For more information about Healthline's partnership with Diabetes Mine, please click here.