an  open-­‐ended  journaling  platform  supporting  the  personalization  of  self-­‐ monitoring  practices  in  Diabetes  

Tag-­‐it-­‐yourself   is   part   of   a   project   aimed   to   improve   our   understanding   self-­‐care   practices   and   technology  in  the  context  of  chronic  disease,  and  to  develop  a  patient-­‐centric  approach  to  the  design  of   tools  and  services  for  the  patient.  We  focused  on  Diabetes  and  we  conducted  interviews  with  diabetics  as   well  as  ethnographic  observations  of  a  diabetes  type  1  support-­‐group.  In  this  context,  the  TiY  represents   our   aim   to   develop   empowering   tools   that   afford   active   engagement   and   appropriation   in   the   growing   area  of  chronic-­‐disease  self-­‐care.     The   first   thing   we   realized   when   looking   at   diabetes   from   the   perspective   of   the   patient   is   that   diabetes   is   so   ubiquitous   and   ever-­‐present   that  takes  the  form  of   a  complex   life-­‐style.   Its   effects   are   so   tightly  entangled  with  everyday  practices  that  it  is  practically  impossible  to  separate  them  from  any  other   daily  activities  and  thoughts.  Its  impact  can  vary  considerably  from  individual  to  individual  also  because   diabetics  develop  different  attitudes  toward  their  condition.   Looking  at  current  technology  such  as  glucose  meters  and  journaling  systems  we  then  noticed  how   this  equipment  fails  to  address  diabetes  as  a  complex  life-­‐style  mainly  because  it  reduces  a  complex  life   style   to   a   sequence   of   medical   values.   We   witnessed   how   this   form   of   reduction   of   complex   every   day   situations  to  medical  and  physiological  values  can  be  particularly  frustrating  from  the  perspective  of  the   patient   who   often   complains:   I   do   not   want   to   be   treated   like   a   number…   the   doctors   only   looks   at   numbers…   I   keep   things   to   myself   because   I   do   not   want   to   seem   stupid   to   my   doctor…   and   so   on.   We   believe   that   numbers   are   obviously   important,   but   not   always   and   everywhere   and,   more   importantly,   not  in  isolation!    We  started  to  believe  it  is  not  the  role  of  the  designer  to  decide  what  should  be  reduced   and   what   should   not,   and   that   we   need   to   complement   the   traditional   biomedical   perspective   by   supporting  the  point  of  view  and  the  concerns  of  the  patient.  While  current  design  tends  to  be  universal  

and   be   the   same   for   everybody,   we   wanted   to   design   a   platform   that   allows   the   patient   to   shape   and   adapt  the  tool  to  their  unique  needs.  We  came  up  with  an  open-­‐ended  journaling  platform  and  the  idea   of  ‘Tags'  to  enable  the  personalization  of  self-­‐monitoring  practices,  to  extend  and  integrate  the  medical   perspective  with  the  voice  and  experience  of  the  patients,  to  allow  the  generation  of  personal  evidence   about  the  impact  of  certain  practices  thus  supporting  the  production  of  meaningful  information,  and  the   establishment  of  lay  expertise.  In  this  way  we  hope  to  improve   diabetics’  personal  engagement  with  their   health,   offer   more   occasions   to   reflect   on   decisions   and   actions,   and   better   inform   the   interaction   between  the  patient  and  her  caregivers.    



Pic.  1  and  2  –  TiY  glucose  entry  level  and  Glucose  reading  page  with  attachments   The   TiY   is   an   open-­‐ended   journaling   platform.   First   of   all,   it   enables   users   to   journal   their   blood   glucose   values   (mmol/L   or   mg/dl)   and   insulin   intakes   (basal   and   rapid)   with   the   option   of   adding   notes   and   photos.   In   addition   to   this   basic   function,   users   can   create   highly   customizable   personal   categories   of   data  called  'Tags'.  Tags  are  meant  to  record  virtually  anything  that  matter  in  a  personal  situation,  and  they   allow  the  adaptation  of  self-­‐monitoring  practices  to  the  variability  of  individual  cases  and  to  the  chronic   and   ubiquitous   nature   of   diabetes.   Thus,   users   can   extend   their   records   with   pictures,   notes   and   user-­‐ generated   tags   either   as   attachments   to   glucose   readings   or   as   independent   entries.   During   our   evaluation  of  earlier  prototypes,  users  found  it  useful  to  generate  a  wide  variety  of  tags  to  suit  different   needs:  meal  tags  to  highlight  pre-­‐  and  post-­‐meal  readings;  tags  to  track  sports  and  other  physical  activities   (gym,   walking,   running,   swimming,   etc);   diet   tags   to   track   intake   of,   for   instance,   carbohydrates,   fat,   fibers,   snacks,   and   new   food;   tags   for   medical   tests   such   as   HbA1c,   Ketones,   and   CBC;   medications;   individual  symptoms  (hypos,  dizziness);  daily  activities;  and  much  more  (Pic.  3,  4,  and  5).  



Pic.  3,  4,  and  5  –  Highly  customizable  Tag  editor,  collection  of  created  tags  and  how  they  look  in  the  log   A  key  element  of  the  TiY  platform  is  then  the  possibility  to  richly  visualize  and  compare  data  of  your   choice  in  a  graph.  TiY  enables  a  high  degree  of  customization  of  graphs  to  better  suit  the  need  to  maintain   a   simple   view   of   the   data   while   at   the   same   time   allowing   users   to   spot   complex   patterns,   meaningful   correlations  and  long  term  trends  (Pic.  6,  7,  8  and  9).  


Pic.  6,7,8  and  9:  selection  of  data  to  be  visualized,  visualization  of  two  data  sets,  overlapping  of   two  time  periods  concerning  one  type  of  data  and  two  type  of  data.   Source  code  is  available  here.  Blog:  http://tiy-­‐tagityourself.blogspot.com  

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