novak world ia day 2 8-13
TRANSCRIPT
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Informa(on infrastructures and everyday lives: recovering health
a7er a disrup(on Laurie Love* Novak, PhD
Vanderbilt University Biomedical Informa?cs
World Informa?on Architecture Day: Nashville 2013
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How is health achieved?
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Scien?fic feats
h*p://www.4-‐traders.com/ISIS-‐PHARMACEUTICALS-‐INC-‐9734/news/FDA-‐Approves-‐Sanofi-‐s-‐Kynamro-‐to-‐Treat-‐Rare-‐Cholesterol-‐Disorder-‐15980926/
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Lucky genes
h*p://images.sciencedaily.com/2008/05/080526155300-‐large.jpg
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Hard work
h*ps://www.fitocracy.com/home/
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Everyday ac?vi?es
Taking the medicine
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Everyday ac?vi?es
Taking the medicine
Taking the walk
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Everyday ac?vi?es
Taking the medicine
Taking the walk Mowing the yard
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Everyday ac?vi?es
Taking the medicine
Taking the walk Mowing the yard
Packing lunch
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Everyday ac?vi?es
Taking the medicine
Taking the walk Mowing the yard
Packing lunch
Making dinner
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Everyday ac?vi?es
Taking the medicine
Taking the walk Mowing the yard
Packing lunch
Making dinner
Remembering the inhaler
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Everyday ac?vi?es
Taking the medicine
Taking the walk Mowing the yard
Packing lunch
Making dinner
Remembering the inhaler
Avoiding McDonald’s
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Everyday ac?vi?es
Taking the medicine
Taking the walk Mowing the yard
Packing lunch
Making dinner
Remembering the inhaler
Avoiding McDonald’s
Grabbing the gym bag
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Everyday ac?vi?es
Taking the medicine
Taking the walk Mowing the yard
Packing lunch
Making dinner
Remembering the inhaler
Avoiding McDonald’s
Grabbing the gym bag Checking the blood sugar
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Through everyday ac?vi?es
We maintain rou(nes
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Through everyday ac?vi?es
We maintain rou(nes
We change rou(nes
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The science of rou?nes
• Repeated pa*erns of ac?vity • Structured using – – Ar?facts – People (or pets!) – Events, or temporal markers – Places
• Frequently disrupted
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Diabetes and the Nashville Flood
• 13 in-‐depth interviews – People with diabetes who were displaced by the flood.
• Survey – Developed by students from the Vanderbilt School for Science and Math
– 400 mailed, 59 returned – Asked about impact on home and health
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Interviews
• Ages 41-‐86 • Type 1 and Type 2 diabetes • Diagnosed for 1-‐32 years • Number of medica?ons: 1-‐13 • A narra?ve approach: – Described diabetes management rou?nes – Told us the story of the flood, displacement and aeermath
– Described how they are managing now
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“Ms. Smith” Female subject, 50 years old, diabe?c for 32 years
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Disrup?ons Female subject, 50 years old, diabe?c for 32 years
“So then I called Direct TV… I told them about the house being under water, and the lady said, well we show that you have three boxes… plus the satellite dish. I said, yes ma'am, and what part of that did you not understand. The house is under water. Well, Ms. Smith, we really need to get those boxes. I said, okay, fine, then you send a tech out, but you tell him to be sure and be prepared with scuba [gear]… because chances are these boxes are down the Harpeth River right now….
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I think I was just in survival right then… because I remember doing that, but I can't tell you what I did on Monday...
Disrup?ons Female subject, 50 years old, diabe?c for 32 years
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Thursday, I had a friend… who was a diabetes nurse, and she said, have you checked your sugar lately? And I just kind of looked at her.
Disrup?ons Female subject, 50 years old, diabe?c for 32 years
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…once I got back to the house that I felt like was home… I [felt] like, okay, let's get back into the groove of things.”
Disrup?ons Female subject, 50 years old, diabe?c for 32 years
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Long term impact of disrup?ons I can tell you that being displaced totally threw me way off track when it came to taking my meds. When I went to see my doctor in July, the results of my A1C test were awful. I had to double my medica6on and agree to 3 month tes6ng intervals instead of the 6 months I had been doing... Since May 1 I have gained 20 pounds because I now live in an apartment. Most of my exercise came from doing yard work and now I don't have a yard.
-‐ 50 year old male
• Increased cost to the health system • Decreased health status of vic?ms
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Some interes?ng ?dbits
• All subjects evacuated with a cell phone I don't know how it made it, but… they had my cellphone. When we leV my bedroom to go out the door, the water was already… up past my waist.
• Support systems varied widely I have had so much support from my family it's unbelievable.
Vs. …my own brother didn't come help, you know. He lives about two miles from here.
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Rou?nes were untethered from structural elements
• Familiar places (homes) were gone or inaccessible
• Daily temporal pa*erns changed • Ar?facts used to maintain rou?nes were gone or different
• Exis?ng challenges became even more complex
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Is this an opportunity to invent something useful?
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Create a link between suppor?ng infrastructure and everyday ac?vity
h*p://www.cdc.gov/niosh/docs/99-‐101/
Inunda?on maps • Affected households
Retail Pharmacy • Prescrip?ons
Electronic health record • Diagnoses • Prescrip?ons • Care plan
Mobile phones • Tex?ng • Loca?on • Useful apps
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• Outreach to individuals and families who may have been affected by a disaster, based on geocoded images linked to addresses in EHR
• Automated reminders to support self care – Checking blood sugar – Taking medica?ons – Appointments – Refill reminders
Create a link between suppor?ng infrastructure and everyday ac?vity
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The linkage may func?on as a “tether” between the individual and the health system
Geocoded addresses • Where we live
Retail Pharmacy • Prescrip?ons
Electronic health record • Diagnoses • Prescrip?ons • Care plan
Mobile phones • Tex?ng • Loca?on • Useful apps
Other data • Climate/weather • Crime rates • Food deserts • Neighborhood walkability
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• Alerts when temperature/ air pollu?on create unsafe condi?ons for cardiac pa?ents
• Customized care to assist people in finding healthy food, pharmacies, other resources near where they live or work
The linkage may func?on as a “tether” between the individual and the health system
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But wait!
Ins6tu6onal tether to individuals? • At what point can the rela?onship not be replaced by an algorithm?
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Bowker, Geoffrey C., et al. "Toward informa?on infrastructure studies: ways of knowing in a networked environment." InternaWonal handbook of internet research (2010): 97-‐117.
Bowker, et al: “Informa?on infrastructure as distribu?ons along technical/social and global/local axes”
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Gra?tude goes to:
• Research subjects • Chris Simpson, MA • Co-‐inves?gators Shilo Anders, PhD and Kim Unertl, PhD
• Funding through Vanderbilt CTSA grant UL1 RR024975 from NCRR/NIH
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Ques(ons?
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A Music City Disaster
• I lost some valuable guitars. • So, I grabbed all the guitars up, but… I couldn't get the drums and all that stuff.
• the thing that I miss [are] some songs that I had wriXen, and I don't have any other copies of them.
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