Some sort of meeting/hangout?

[Damon Muma]

I am feeling the urge to contribute to this movement, but I'm a bit lost on what has been done/tried/planned or what would be effective and useful. Worried that efforts would be duplicating others or not usefully focused. I've had random friends who aren't even diabetic but into coding offer to help but wasn't sure what to point them at.

I was thinking it would maybe be cool to find a time to have meet-ups and throw out an open invitation. Skype? Google hangout? I never use any of these platforms so not sure what's cool ;). Any interest in a bi-weekly meet n gab abt these topics?

[Simon Carter]

Hi Damon,

We're certainly after UX help for ManageBGL.com, and any redesign help would be very much appreciated.

CSS/tpl (Smarty html templates) could be put on github for redesign and also for translation. We're a non-profit.

[Nathan West]

On Mon, Oct 14, 2013 at 3:20 PM, Damon Muma <dam...@gmail.com> wrote:

I am feeling the urge to contribute to this movement, but I'm a bit lost on what has been done/tried/planned or what would be effective and useful.  Worried that efforts would be duplicating others or not usefully focused. I've had random friends who aren't even diabetic but into coding offer to help but wasn't sure what to point them at.

I was thinking it would maybe be cool to find a time to have meet-ups and throw out an open invitation. Skype? Google hangout? I never use any of these platforms so not sure what's cool ;). Any interest in a bi-weekly meet n gab abt these topics?

Weighing in with some experience doing dev calls from the GNU Radio community:

* Within GNU Radio we used to use SIP, but ditched it in favor of G+ because it's kind of complicated to get set up, especially the first time around.
* G+ hangouts are ok, but without a paid account there's a limit of (I think) 8 people in the call. May not be an issue here, but it's worth keeping in mind. The plus side from an open development perspective is that you can (optionally) stream live to youtube and then video gets saved and posted to youtube after the call.

* Skype has wildly different support for various platforms. I think voice is usable for free, not sure about limit. I actually haven't tried it for a dev call.

From a chat perspective I'm a fan of IRC, but I understand the constant on nature makes it kind of a hassle for some people to keep up with.

-Nathan

[Anthony Di Franco]

A regular meeting would be a great idea, I think, and I'm eager to get one started.
I'll propose next Monday evening at Farley's East in Oakland at 7 pm and take any other suggestions that are convenient for people.

As far as coding / hacking for the good of diabetes goes, I have some thoughts on good projects to work on as a type I diabetic with an academic background in systems / control theory who works as a programmer:

Security

In 2011 the tragically late Barnaby Jack invited me to share the stage with him a couple times to help him present his insulin pump hacks where he demonstrated the total lack of security in insulin pumps, permitting remote control of all functions with no prior knowledge about an individual pump. He moved on to similar work with pacemakers. I was looking forward very much to his work putting pressure on manufacturers to secure their products, and more broadly to improve their quality standards and innovate a bit in their products' function to produce meaningful progress in patient standards of care, none of which they seem to have much of any interest in now, certainly not in proportion with the enormous profits they reap from selling the products. When Barnaby died, much of my hope for the progress he was driving died with him, and I took a more serious interest in a better way forward. Building a broader community focused on medical device security research could fill this important function in a way that doesn't depend on just one person's talent, vision, and survival. Security research is not my specialty personally, and maybe isn't any of ours either, but I'm conversant in the basic ideas and I know there is a lot of talent out there that deserves to do important, meaningful work like this, and articulating the problems and organizing the efforts could be the way to connect the talent with the meaning.

Closed-loop control

In the past few months Medtronic began marketing an incrementally-improved model of its pump as an 'artifical pancreas'. Until now 'artificial pancreas' has meant automatic dosing based mainly on continuous sensor readings in every usage I'm aware of, but this new pump has the same manual dosing as the old models but adds a feature that cuts off insulin if the patient is trending hypo. This is no doubt a useful feature for many diabetics but hyping it thus is an insult to the diabetic community/market's intelligence and, I worry, symptomatic of the broad lack of innovation in the field. I suspect this even more because from my academic background in control theory I find the control algorithms that appear in public research I've glanced at on closed-loop blood glucose control to be some of the oldest and least powerful and stable in the field of control that I know of (it's been a few years since I spent much time looking at this, granted, but still I've heard no news of breakthroughs since). Closed-loop blood glucose control involves some of the hardest problems in control, such as nonlinearity, long time lags, noisy feedback, and probably should be formulated in a multiple-input, vector state, multiple-output way, but approaches I am aware of fall far short of being able to deal with / do any of this, which is sad because the state of the art has effective approaches for these problems.

The community of diabetics could aggregate sensor and dose data from patients into an open data set with which to build models and do off-line experiments with proposed algorithms, which is an established methodology in the field. It could then build an ecosystem of open algorithms and hold contests for their improvement and selection. I have some thoughts on interesting algorithms to try.

Open source treatments

​Open-sourcing everything required to treat diabetes is the most ambitious goal and difficult goal. However, it synergizes well with the broader DIY Bio movement. First, since recombinant insulin​ was the first major commercial success of biotechnology and set the pattern for future development of biologics. Second, since the tools involved are fundamental to biology and medicine and overlap well with the tool set needed for all serious DIY Bio research and other community goals: production and purification of biologics, infusion pumps, in-vitro sensing. Among the biologics that might be interesting again to diabetics are various of several treatments that have cured type I diabetes in mice.

Open-sourcing treatments is also important because pharmaceuticals in general and insulin pumping specifically suffer from very perverse economic incentives that favor keeping people on the treatments with the most expensive stream of disposable / consumable supplies involved. Open-source efforts could develop incentives more attuned to encouraging innovations that improve patient outcomes than to encouraging sitting on profits from keeping patients addicted to consumable supplies. Jet injectors are an established technology to administer insulin that need not use and don't usually use consumable supplies. Radio-frequency spectroscopy of body fluid is a means of measuring blood glucose continuously that also doesn't directly need consumable supplies and has broader applicability to sensing concentrations of other components of body fluids of interest to medicine in general and quantified-selfers particularly, and a group at Berkeley has done some of the best existing research on the topic. Neither jet injection nor radio-frequency spectroscopy require any complex hardware or exotic materials to implement so they would make good candidates for open-source experimentation.

Combining these all into a working system would also result in a platform useful for taking the hypothetical open-source closed-loop algorithm research to the point of real tests.

On Mon, Oct 14, 2013 at 1:20 PM, Damon Muma <dam...@gmail.com> wrote:

I am feeling the urge to contribute to this movement, but I'm a bit lost on what has been done/tried/planned or what would be effective and useful.  Worried that efforts would be duplicating others or not usefully focused. I've had random friends who aren't even diabetic but into coding offer to help but wasn't sure what to point them at.

I was thinking it would maybe be cool to find a time to have meet-ups and throw out an open invitation. Skype? Google hangout? I never use any of these platforms so not sure what's cool ;). Any interest in a bi-weekly meet n gab abt these topics?

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[Simon Carter]

I also read some control-theory research by a newly diagnosed T1 who was also a professor of control theory. His approach was inadequate in the extreme.

- S

On Tuesday, October 15, 2013 7:20:08 AM UTC+11, Damon Muma wrote:

[Anthony Di Franco]

Reference would be much appreciated on that.

--

[Benjamin West]

Wow, it's really exciting to here about all the community interest.

I would love to meet up; I am in San Francisco, but I can't make Monday nights.  Any other night would be ok.

For the time being can I suggest a G+ video chat/hangout for next Thursday though, as a one-off kind of thing?

-bewest

[Simon Carter]

Hi guys,

I'm coming from Australia to SF and will be in town from 13-20th November. Would love to catch up, do dinner etc! I need someone to show me your great city!

We started our own Medical Devices meetup group in Melbourne recently and had 100 people turn up to the first night! My presentation was very warmly accepted and we received some great feedback and contacts.

Please keep me in the loop about any meetup!

Cheers,

Simon

On Tuesday, October 15, 2013 7:20:08 AM UTC+11, Damon Muma wrote:

[Anthony Di Franco]

Sounds great.
If you have a sense of when would be convenient for you let's plan something.

--

[Damon Muma]

Thursday evening works for me for a g+ meetup of some variety. Does 7pst/10est sound good? I'm in Canada (actually London Ontario the birthplace of insulin ;) ) so a Bay Area meet up wouldn't work for me but it would be awesome if other people got together.
Awesome to hear the meetup in Australia was so well attended!

[Anthony Di Franco]

Works for me at least.
I'll post up at Farley's on Thursday at 7 with a computer running a conference to you.

On Sun, Oct 20, 2013 at 7:57 PM, Damon Muma <dam...@gmail.com> wrote:

Thursday evening works for me for a g+ meetup of some variety. Does 7pst/10est sound good?  I'm in Canada (actually London Ontario the birthplace of insulin ;) ) so a Bay Area meet up wouldn't work for me but it would be awesome if other people got together.
Awesome to hear the meetup in Australia was so well attended!

[Benjamin West]

Howdy all,

Sorry for the late reply, I can only make a few minutes tonight, but I hope you guys manage to meet up.

I think going forward, it'd be cool to attempt to meet up and chat more often.

If you want to chat, I often hang out in #medevice and #reddit-diabetes.

I'll be there tonight for a few minutes; not sure if you guys had planned on G+.

In general Thursdays are pretty good, but tonight got double booked somehow. Sorry about that.

Anthony, there are a bunch of people that are in the Bay Area that would love to meet up, but not all are on the mailing list...  Maybe you can help me wrangle a meetup though, that'd be awesome.  I can think of 5 - 10 in the immediate area... and we can do a better job of establishing video/irc sessions in future.

-bewest

[Anthony Di Franco]

Apologies to anyone there; on the way and will be there in 25 minutes ; lost track chasing a morsel for a deadline at work.

[Damon Muma]

Apologies from me as we'll!  I ended up unable to attend. Did anything end up happening? I saw a missed vid chat call when I finally got back to my desktop

—
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[Anthony Di Franco]

Nothing a propos.

I'll consider maybe getting a Counter Culture Labs event together to put more relevant people in the know.

[Damon Muma]

Sweet!

There's a Canadian organization called 'Hacking Health' that is having a meetup in LondonOnt soon and I'm going to contact the organizer for some more info. I don't know too much about them but they also have meetups all over Canada and could be a source of interest/promotion/manpower/world peace:   http://www.hackinghealth.ca/

--
Damon Muma

@thedamon

226-268-0544

http://www.whatisdamon.com

[annaslipp]

Hi everybody - This post thread is really interesting.

A while ago, I bought the URL www.hackingdiabetes.org.  My intention was to potentially create a blog of some sort through which I wrote about the types of things I'm doing on HIT in the policy, device spheres related to the need for data standards, interoperability, HIT innovation based on patient needs, the promise of integrated/aggregated med device/tracker data to provide better outcomes measures for comparative effectiveness research, etc.  I do a fair amount of volunteer work/speaking about these issues with FDA, ONC, HHS and a variety of industry groups.  My idea was to use the blog to start stimulating a dialog on some of these issues from the perspective of a patient who lives with the reality of HIT and devices and is frustrated by the complacency and slow progress.  

As some of you know from last year's diabetes mine innovation summit, I co-founded a visual data analytics company a few years ago, based on my frustration with data analytics and outcomes measures, especially within the diabetes world.  However, I am not a 'hacker' in the sense of actually writing code (apart from a bit of CSS and really, really basic stuff).  I have very little time to devote to a blog, but I've been thinking about using the blog as more of an external community forum of sorts, featuring some of the great work that you guys and others are doing to 'crowd source' and solve these issues as patients who really understand these issues and have the skills and drive to do something about it, in spite of the lack of progress from government, industry.  One of the common refrains I hear from people in DC and the industry is that there is no patient movement toward making progress and driving demand for improvement in device interoperability, data platforms, etc.  I keep telling them that this is not the case, but I would love to have something to point to that provides evidence of this 'movement' that goes beyond me.  

I mentioned this in passing to Amy Tenderich, and she thought it sounded fun. But, I wanted to throw it out to you guys to get your input.  Given this series of posts/replies, it sounds as if this might be helpful and interesting.  Again, I don't have a ton of time to generate a lot of original content, but perhaps we can have a couple of designated 'contributors' who can help.  I put up a shell site using a wordpress template, which I'm told sort of mimics Pinterest.  I use it for my much neglected pet health advocacy blog (www.pethealthadvocate.me), and I like the format and think it might work for something like this.  

I welcome any thoughts/suggestions/comments.  I think this could be a good platform for our d-hacker community. Although I'm not a coder, I'm a hacker in spirit and I'm determined and committed to advancing patient-generated HIT platforms, which will actually advance our ability to care for ourselves and empower us to live longer and better with diabetes.  

I look forward to hearing from you!  Feel free to email me directly with any comments/feedback at anna...@mac.com.

Thanks!!

which I've been sitting on as I think about