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.