Novak world ia day 2 8-13
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Transcript of Novak world ia day 2 8-13
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
How is health achieved?
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/
Lucky genes
h*p://images.sciencedaily.com/2008/05/080526155300-‐large.jpg
Hard work
h*ps://www.fitocracy.com/home/
Everyday ac?vi?es
Taking the medicine
Everyday ac?vi?es
Taking the medicine
Taking the walk
Everyday ac?vi?es
Taking the medicine
Taking the walk Mowing the yard
Everyday ac?vi?es
Taking the medicine
Taking the walk Mowing the yard
Packing lunch
Everyday ac?vi?es
Taking the medicine
Taking the walk Mowing the yard
Packing lunch
Making dinner
Everyday ac?vi?es
Taking the medicine
Taking the walk Mowing the yard
Packing lunch
Making dinner
Remembering the inhaler
Everyday ac?vi?es
Taking the medicine
Taking the walk Mowing the yard
Packing lunch
Making dinner
Remembering the inhaler
Avoiding McDonald’s
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
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
Through everyday ac?vi?es
We maintain rou(nes
Through everyday ac?vi?es
We maintain rou(nes
We change rou(nes
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
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
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
“Ms. Smith” Female subject, 50 years old, diabe?c for 32 years
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….
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
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
…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
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
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.
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
Is this an opportunity to invent something useful?
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
• 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
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
• 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
But wait!
Ins6tu6onal tether to individuals? • At what point can the rela?onship not be replaced by an algorithm?
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”
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
Ques(ons?
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.