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Author Topic: MIT Media Lab’s Health & Wellness 2012: patient friendly innovations  (Read 1429 times)
natnnnat
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« on: January 17, 2012, 07:18:00 PM »

This is not so much kidney news as general patient-related industry-happenings.
I thought this sounded like a good direction for thinking around patient related medical innovation.
xn

http://e-patients.net/

________________

MIT Media Lab’s Health & Wellness 2012: ten day innovation fest, six us-centered projects--e-Patient Dave

I’m spending today (ONLY today, unfortunately) at the MIT Media Lab’s third annual Health & Wellness Innovation 2012 event.  It’s a two week competition – six teams pursuing some terrific ideas for the most patient-friendly health innovations I’ve ever heard of. Or close to it.

[... I've moved some information about "tweeting in" to the event to the end of this post...]

What’s conspicuously different about this event compared to any other I’ve seen:

In this room, if what needs to get done isn’t getting done, it’s viewed as a system failure, not a “patient compliance” problem. These people are striving to make everything work better, in our hands.

After 150 events in two years (medical conferences, tech events, policy meetings), I’ve concluded that medicine’s single most important dysfunction is the idea that useful wisdom comes only from biology (or other medical innovations), and it’s up to us to use whatever they danged well give us, containing that received wisdom.

So when patients don’t do what they’re told, it’s a “compliance” problem – and people in healthcare bitch about how irresponsible we are. Even the October Health Leaders magazine had this near the start – in its “Patient Engagement” issue!

    In our annual Industry Survey, leaders cite patient noncompliance and lack of responsibility as the fifth-greatest driver of healthcare costs at their organizations.

Meh! How about you guys get your act together and give us methods that work for us?

I mean, seriously: in what other industry can they respond to “This is hard to use” and “I don’t like doing this” by saying “You’re just not good enough for our wonderful inventions”?

I used to work in software companies that tried that approach. They went out of business when innovators came along who understood that easy to use gets done better, and people like it more.

A great example is GlowCaps – a pill bottle cap that glows, beeps, or texts you when it’s time to take your pills. (Check out the “adherence” results from a clinical trial – nearly perfect! No change in patient “morality” – just a better freakin’ tool for us to use.)  (David Rose, formerly of that company (now sold), is in this event.)

Here’s to the people working on these challenges. If you’re a Twitter fiend, follow those hashtags and let the innovators know what you like.

p.s. Anyone who wants to complain about patient “compliance,” please remember that the shoe’s on the other foot with clinician “quality”: hospital workers only wash hands per protocol about half the time, physicians prescribe the standard of care only half the time. The result, as Susannah Fox blogged about Peter Margolis, is that “.5 x .5 = .25″ – the shared unworkability of everything means clinicians do what they’re told half the time, and patients do too, so healthcare on balance operates at 25% efficiency.

And we grouse about rising costs and fail fail fail.

Here’s to the geeks who understand what works.

___________________________

[...]  I think they’re going to be crowd-sourcing input from us out here, via Twitter and probably some blogs.

These are all heavily data-centered, open-source, collaborative projects. Below I’ll say why this looks so very different to me. But first, here are the Twitter hashtags, with links to the Twitter feeds:

    Top level hashtag #MLhw12 -
        (go to the blog post for links to description, feed, archive and live participation)

    Project 1 – pain management including skin conductance and data-reporting pillbox (#MLpain)
        (go to the blog post for links to description, feed, archive and live participation)

    Project 2 – asthma management with toy-like spirometer (#MLasthma)
        (go to the blog post for links to description, feed, archive and live participation)

    Project 3 – cardiac rehab with a Microsoft Kinect and pulse oximeter (#MLcardiac)
        (go to the blog post for links to description, feed, archive and live participation)

    Project 4 – Integrating MOTOACTV Fitness Tracker w Hypertension and Diabetes Management – with a hacked insulin pen (#MLdiab)
        (go to the blog post for links to description, feed, archive and live participation)

    Project 5 – humanizing mobile health apps by tying people’s life goals to their medical metrics (#MLlifegoals).
    I especially love this one – I tweeted from the project’s description: “the problem is [most apps] focus on goals that lack true meaning to the user … apps focus on heart rate, when pt wants 2b able to play w/her grandkids for 5 min”
        (go to the blog post for links to description, feed, archive and live participation)

    Project 6 – management of post-op needs including a virtual pet that shows how well the child is doing (#MLpostop)
        (go to the blog post for links to description, feed, archive and live participation)

from http://e-patients.net/
Logged

Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
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