Owning your own health care sstar model

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  • 1. White  Paper  Patient  Advocacy:  A  STARR  Approach  to  Owning  Your  Own  Healthcare         Vicki  Whiting,  Ph.D.   Gore  School  of  Business   Westminster  College   1840  South  1300  East   Salt  Lake  City,  UT    84105   (435)  640-­‐2286   (801)  484-­‐3767  -­‐  fax   vwhiting@westminstercollege.edu     Shelley  Braun,  Ph.D.   Associate  Director   Utah  Health  Policy  Project   Adjunct  Professor   Westminster  College   1840  South  1300  East   Salt  Lake  City,  UT    84105   (435)  640-­‐2286   (801)  484-­‐3767  -­‐  fax        
  • 2. More  and  more,  people  who  are  ill,  along  with  their  families,  friends,  and  caretakers,  find  themselves  lost  in  a  chaotic  swirl  of  medical  procedures,  practitioners,  and  paperwork.  With  an  increased  complexity  of  and  reliance  on  technology  by  health  care  practitioners,  many  patients  find  themselves  on  the  margin  of  medical  encounters  instead  of  at  the  center.        This  is  particularly  problematic  for  those  individuals  for  whom  the  mainstream  evidence-­‐based  treatments  fail.  While  evidence  based  protocols  are  vital  to  improving  patient  care,  they  are  based  on  the  best  evidence  for  the  most  people,  that  is,  they  work  at  the  population  level;  they  absolutely  do  not  serve  the  outliers.    A  danger  of  such  protocols  is  that  practitioners  buy  into  the  idea  that  they  should  work,  and  are  often  at  a  loss  to  offer  an  explanation,  no  less  an  alternative  when  they  fail.  The  resulting  frustration  can  result  in  blaming  the  patient  for  the  failure  of  the  treatment.    Applying  the  same  failed  treatment  over  and  over  again,  as  was  the  experience  of  one  young  woman  (interviewed  by  Braun),  is  not  only  harmful  but  demoralizing.    Patients  ought  to  be  at  the  center,  not  the  margins,  of  care.    To  address  the  challenge  to  conventional  medical  practice  to  bring  the  outlier  patient  into  the  center  of  care,  we  propose  the  following  SSTAR  approach  to  coordinated,  collaborative  care,  centered  on  committed  engagement  by  patients  and  their  families,  friends,  and  caretakers.         SELECT the  right  medical  team RALLY   SHAPE support  the  conversation ASK   TAKE  CONTROL   for  help of  your  information        
  • 3. Select  The  Right  Medical  Team  Identify  a  collaborative  and  cooperative  team  of  medical  practitioners  who  listen.    This  team  is  anchored  by  a  local  “willing  doctor”  who  is  able  to  listen  to  the  patient,  and  his  or  her  family,  friends,  and  care-­‐takers.    This  doctor  will  take  a  new  look  at  the  whole  picture  of  the  illness,  of  the  patient,  of  the  person  who  is  sick,  as  many  times  as  it  takes  to  find  the  right  diagnosis  and  the  right  treatment  while  minimizing  unnecessary  tests,  procedures,  medications,  and  pain.      The  medical  team,  made  up  of  a  combination  of  practitioner  levels  (MD,  NP,  PA,  RN,  OT,  PT,  etc),  will  collaborate  with  the  patient,  and  coordinate  their  communication  and  care  among  team  members.    Whiting  has  created  an  integrated  team  for  her  son,  Kevin.    This  group  of  practitioners  collaborates  with  Kevin’s  self-­‐reporting  (see  below)  and  each  other  to  integrate  care.    For  example,  before  changing  a  medication  ....     2/12/12 12:26 PM   Comment [1]: Need  Vicki’s  story  Shape  the  Conversation  Speak  up  for  yourself  or  find  someone  who  can  speak  for  you.    Our  clinical  medical  system  is  a  powerful  conglomeration  of  knowledge,  expertise,  and  resources—one  in  which  the  person  of  the  patient  can  easily  be  lost,  pushed  to  the  margin  of  the  medical  encounter.    It  is  a  daunting  task  to  speak  truth  to  power  under  the  best  of  circumstances,  yet  imperative  to  the  diagnosis  and  therapeutic  management  and/or  resolution  of  difficult,  chronic,  and  outlier  conditions.    Particularly  important  when  a  patient  doesn’t  fit  into  the  standard  of  illness  etiology  and  medical  practitioners  are  at  a  loss  for  explanation.  Braun  experienced  this  herself  when  being  treated  for  an  ulcerated  cornea.    She  found  herself  being  asked  the  same  questions  over  and  over  again  about  her  personal  contact  lens  care  at  each  of  3  visits,  and  felt  blamed  for  her  condition  although  her  care  regime  of  20+  years  had  never  before  resulted  in  any  eye  issues  at  all.    Finally,  exasperated,  she  replied  to  the  third  doctor’s  repeat  question  about  contact  lens  care:    “I  am  not  willing  to  have  that  conversation  with  you,  but  I  will  have  a  conversation  about  how  to  reduce  the  risk  for  repeat  corneal  ulcers.”    This  simple  assertion  and  re-­‐direction  of  the  conversation  yielded  important  information  about  choices  she  could  make  to  ensure  eye  health  in  the  future,  and  reminded  the  doctor  that  she  was  a  person,  not  an  eyeball.    Take  Control  of  Your  Information  Take  ownership  of  your  medical  information.    Self  track  your  quality  of  life  index  daily  and  keep  a  copy  of  your  medical  record;  it  belongs  to  you.        Patients  have  a  unique  contribution  to  make  to  their  care:  the  experience  of  being  sick.    Traditionally  in  clinical  medicine,  the  patient’s  experience  of  his  or  her  illness  and  subsequent  treatments  is  relegated  to  the  (inferior)  category  of  subjective  information.    In  the  hierarchy  of  clinical  diagnostic  information,  objective  input  (test  results,  images)  is  considered  more  reliable,  thus  more  valuable,  than  subjective  (a  patient’s  experience)—despite  the  fact  that  early  career  medical  students  spend  a  lot  of  time  learning  to  take  information  from  their  patients  in  the  physical  exam.    Indeed,  at  a  recent  Global  Health  
  • 4. conference,  after  one  of  the  authors  (Braun)  was  taken  to  task  by  a  well-­‐established  late  career  doctor  for  proposing  that  this  objective-­‐subjective  hierarchy  is  deeply  entrenched  in  our  medical  system  today,  a  medical  student  countered  with  the  statement  “yes  we  learn  it  but  it  quickly  gets  pushed  down  into  being  unimportant  compared  to  all  the  other  diagnostic  tools  we  are  learning.”  We  propose  that  patients  “self-­‐track”  a  few  quality  of  life  measures  (following  Whiting’s  appetite,  pain,  energy—APE—index  used  during  the  long  experience  of  her  son  Kevin’s  illness),  a  few  times  a  day  on  a  simple  5  point  scale.    Items  important  to  track  will  vary  from  patient  to  patient,  and  might  include  sleep,  pain,  appetite,  energy,  drudgery  of  daily  therapeutic  routine,  support.  This  turns  a  patient’s  subjective  measures  into  a  relative  quantitative  measure,  which  the  health  care  providers  can  include  and  correlate  with  specific  treatments  and  medications.      Today’s  medical  record  is  comprehensive,  yet  fragmented.  Practitioners  are  hard  pressed  to  keep  in  sight  the  topography  of  a  patient’s  illness.    It  is  that  big  picture,  the  30,000  ft  view  that  is  vital  to  the  process  of  seeing  patterns  and  fitting  the  often  complex  assortment  of  puzzle  pieces  together  in  the  course  of  a  patient’s  diagnosis  and  treatment.      We  propose  that  patients  create  a  one-­‐page  timeline,  or  history,  of  their  illness,  recording  seminal  events  and  treatments  (with  a  simple  “worked”  or  “didn’t  work”  indicator)  in  chronological  order.    This  document  can  be  taped  to  the  front  of  the  medical  record  and  easily  referred  to  as  a  quick  guide  for  medical  practitioners.    In  addition,  patients  may  want  to  create  and  carry  a  more  comprehensive  timeline  including  more  detail  about  specific  treatments,  dosages,  and  their  efficacy,  including  outcome.      Ask  For  Help  Hire  a  healthcare  advocate,  identify  a  Center  of  Excellence  for  your  condition,  and  research  your  illness.  It  is  virtually  impossible  to  advocate  for  and  defend  oneself  in  the  best  of  circumstances,  no  less,  when  sick,  in  pain,  worried  for  life,  and  concerned  about  the  not-­‐sick  parts  of  life  like  keeping  a  job,  holding  a  family  together,  and  keeping  one’s  finances  intact.    A  local  healthcare  advocate  can  be  the  point  person  for  the  medical  team  and  the  liaison  between  the  patient  and  the  medical  system.    It  is  the  advocate’s  first  priority  to  fight  for  the  well-­‐being  of  the  patient.    A  Center  of  Excellence  looks  for  new  and  more  effective  diagnostic  tools  and  treatments  for   2/12/12 12:42 PMthose  inevitable  individuals  for  whom  the  mainstream  evidence-­‐based  treatments  fail.     Comment [2]: I  need  to  rework  this  While  evidence  based  protocols  are  vital  to  improving  patient  care,  they  are  based  on  the   section    I  poached  this  for  the  beginning  best  evidence  for  the  most  people,  that  is,  they  work  at  the  population  level;  they  absolutely  do  not  serve  the  outliers.    A  danger  of  such  protocols  is  that  practitioners  buy  into  the  idea  that  they  should  work,  and  are  often  at  a  loss  to  offer  an  explanation,  no  less  an  alternative  when  they  fail.  The  resulting  frustration  can  result  in  blaming  the  patient  for  the  failure  of  the  treatment.    Applying  the  same  failed  treatment  over  and  over  again,  as  was  the  experience  of  one  young  woman  interviewed  by  Braun,  is  not  only  harmful,  but  demoralizing.    
  • 5.  Rally  Support  Enlist  the  help  of  your  family  and  friends  to  track  and  ensure  your  quality  of  life.  Everyone  who  cares  about  the  patient  can  play  a  role  in  lending  support.    Friends  and  family  can  visit,  can  provide  respite  to  caretakers,  and  can  keep  a  hawk’s  eye  on  care  in  hospital.    The  genius  of  surrounding  the  patient  with  people  who  care,  is  that  they  can  dedicate  themselves  to  the  effective  care  and  compassionate  treatment  of  one  individual  while  the  medical  practitioners  must  care  for  many.    In  addition,  this  support  team  can  keep  at  the  forefront  the  day-­‐to-­‐day  quality  of  life  issues  so  often  lost  in  clinical  care.      Our  proposed  5-­‐pronged  SSTAR  approach  surrounds  the  individual  with  a  “circle  of  defenders,  made  up  of  a  team  of  individuals  who  will  coordinate  and  advocate  for  him  or  her.      This  pulls  the  patient  as  person  back  to  the  center  of  care.       SELECT the  right  medical  team 2/12/12 Stick_Figure_by_101stickfigure101.jpg (488×527) RALLY   SHAPE support  the  conversation   fc07.deviantart.net/fs70/f/2010/087/c/4/Stick_Figure_by_101stickfigure101.jpg 1/1 ASK   TAKE  CONTROL   for  help of  your  information