Tell  It  Like  It  Seems:  Challenges  Iden4fying  Requirements    of  a  Learning  Health  System       Allen  Flynn,  PharmD  

Johmarx  PaDon,  MD  Jodyn  PlaD,  PhD  

Images:  Ennead  Architects  “building”.      Bluedarkat  “psychedelic  elephant  pop  art  design”.            

The  health  system  is  like  an  elephant  

Images:  Bluedarkat  “psychedelic  elephant  pop  art  design”.            

 Truths  about  the  health  system  come  from  various  viewpoints  

Clinical  Prac4ce  and  

Research  

Engineering  

Informa4cs  

Biosciences  

Consumers  

Computer  science  

 Individuals  “tell  it  like  it  seems”  to  them  

Collabora4vely  realizing  a  LHS  will  require…  

(1) A  transdisciplinary  community  of  researchers,  (2) funded  by  various  sources,  (3) anchored  in  a  common  overarching  vision,  (4) driven  by  a  set  of  deep  and  enduring  research  

ques4ons.    -­‐  Charles  P.  Friedman,  December  28,  2014  

Images:        Ennead  Architects  “building”  Bluedarkat  “psychedelic  elephant  pop  art  design  .  Pixgood  “circuit  board  wall  art”.  .                

Disclosures  

•  None  

Images:  Ennead  Architects  “building”.      Bluedarkat  “psychedelic  elephant  pop  art  design”.            

•  Mo4va4on  and  background  •  Problem  of  gathering  requirements  •  Research  ques4ons  •  Methods  •  Results  •  Conclusions  

Outline  

Images:  Ennead  Architects  “building”.      Bluedarkat  “psychedelic  elephant  pop  art  design”.            

High  cost  care  of  mediocre  quality  

Davis, K., Squires, D. Stremikis, K. & Schoen C. (2014). “Mirror, mirror on the wall: how the performance of the U.S. health care system compares internationally, 2014 update.” Commonwealth Report.

The  United  States  health  care  system  is  the  most  expensive  in  the  world,  but  data  show  it  consistently  underperforms  rela4ve  to  other  

countries  on  most  dimensions  of  performance.  

$8,500  in  U.S.  

$4,400  average  

2014  

Per  capita  expenditure  2011  

Images:  UCL.AC.UK  (Post  PCR  Laboratory)  –  modified  photo.          Pilgrim  Medical  Center  (exam  room)  –  modified  image.            

The    divide  

Images:        Mallow  “Document”  Lewis  “Microscope”    Warslab  “ICU”.                

Health  Care  Prac4ce  &  Health  Behavior  

Scien4fic  Analysis  Evidence  

Con4nuous  rapid  systema4c  learning  

Images:      “Analysis”,  “User”  from  The  Noun  Project..      Warslab  “ICU”            Bluedarkat  “psychedelic  elephant  pop  art  design  .  Pixgood  “circuit  board  wall  art”.                

Disseminate  Evidence  as  

Advice  

Inform  Care  &  Behavior  

Scien4fic  Analysis  

Share  Data  

Problem:  Generate  a  minimum  set  of    requirements  to  support  a  common  LHS  vision  

Images:  Bluedarkat  “psychedelic  elephant  pop  art  design  .  Pixgood  “circuit  board  wall  art”.                

“A  massive  system  of  systems.”  or  

an  “ultra-­‐large  system.”  

Friedman  C,  et  al,  J  Am  Med  Inform  Assoc,  2014,  “Toward  a  science  of  learning  systems:  a  research  agenda  for  the  high-­‐func4oning  Learning  Health  System”.  

•  No  individual  person    can  ar4culate  them  all      

•  Many  scien4fic  and    other  perspec4ves  

•  Iden4fica4on  &    reconcilia4on  of  various  LHS    concepts  and  related  requirements  are  needed  to  achieve  a  common  overarching  vision  

Research  ques4ons  

1      What  learning  health  system  requirements                      can  be  found  already  in  the  literature?            2    What  new  requirements  can  be                        generated  by  using  narra4ve  ar4facts              to  tell  stories  about  a  LHS?            3    What  are  some  challenges  of  

                   using  story-­‐telling  techniques  to  to            elicit  LHS  requirements?  

Images:      Ennead  Architects  “building”  Bluedarkat  “psychedelic  elephant  pop  art  design  .  Pixgood  “circuit  board  wall  art”.                

Methods  

Search  Literature  

Write  LHS  Narra4ves  

Create  LHS  Diagrams  

Make  LHS  Storyboards  

Images:  Ennead  Architects  “building”    Bluedarkat  “psychedelic  elephant  pop  art  design”.    Logos  by  MisterPixel,  N.  Eul,  G.  Dolce-­‐Merda,    A.  Gajdosik      

Literature  search  

•  “Seed  ar4cles”  with  LHS  defini4ons  •  References  from  “seed  ar4cles”  examined  •  IOM  2012  “Best  Care  at  Lower  Cost”  Report  analyzed  for  LHS  concepts  and  requirements  

Images:        Bluedarkat  “psychedelic  elephant  pop  art  design  .  Pixgood  “circuit  board  wall  art”.                

Narra4ve  stories  •  Select  domain  •  Write  a  problem  statement    •  Tell  of  how  it  seems  the  LHS  might  “work”  •  Gather  feedback  about  LHS  concepts  

Development  of  diagrams  

•  Develop  diagrams  to  explain  how  it  seems    the  LHS  might  “work”  

•  Gather  feedback  about  LHS  concepts  

Iden4fy  a  problem  of  interest  

Iden4fy  par4cipa4ng  stakeholders  

Iden4fy  needed  experience  data  Standardize  representa4on  

Aggregate    experience  data  

Analyze    experience  data  

Generate  findings  

Human  interpreta4on  of  findings  

Generate  and  package    knowledge  for  dissemina4on  (DKOs)    

Iden4fy  message  recipients    

Generate  and  send  “message”    

Collect  and  record  experience  data  (modify  data  to  be  collected?)  

Afferent   Efferent  

Respond  to  message  

hDp://healthinforma4cs.umich.edu/research/lhs-­‐ini4a4ves/tci/storyboards  

Design  and  share  story  boards  

LHS  requirements  repeated  in  the  literature  

•  Integrates  with  exis4ng  health  IT  systems  •  Accumulates  data  automa4cally  in  analyzable  form  •  Is  pa4ent  oriented  &  supports  consumers  directly  •  Is  query-­‐able  by  end  users  with  health  ques4ons  •  Relies  on  federated  data  

Images:        Ennead  Architects  “building”  Bluedarkat  “psychedelic  elephant  pop  art  design  .  .                

LHS  requirements  generated  using  ar4facts  •  Indicates  varying  levels  of  analy4cal  rigor  and  reliability  of  evidence  

•  Interprets,  vets,  and  validates  new  knowledge  •  Formulates,  tailors  and  makes  advice  available  •  Supports  shigs  between  individual  level  and  popula4on  level  views  and  decision-­‐making  

•  Automa4cally  begins  capturing  new  data  at  the  moment  when  knowledge  is  applied  to  a                              decision  related  to  a  problem  of  interest  

Images:        Ennead  Architects  “building”  Bluedarkat  “psychedelic  elephant  pop  art  design  .  Pixgood  “circuit  board  wall  art”.  .                

•  As  a  form,  short  narra4ve  stories  were  too  simple    •  Prose  tended  to  hide  the  LHS  infrastructure    •  Feedback  focused  on  content  and  not  concepts  •  We  struggled  to  communicate  these  things:  

–  Itera4on  – Timeframes  – Scope  of  the  problems  of  interest  – What’s  new  and  different  in  an  LHS  – Areas  of  system  science  inquiry  

Challenges  genera4ng  requirements  

Images:    Bluedarkat  “psychedelic  elephant  pop  art  design  .  Pixgood  “circuit  board  wall  art”.  .                

Conclusion  –  “Tell  it  Like  it  Seems”  

Some  new  shared  concepts  moving  us  towards  

a  “common  overarching  vision”  of  a  Learning  Health  System  

•  Understanding  came  from  repeated  sharing  •  Several  “new  to  us”  LHS  requirements  emerged    •  Transdisciplinary  scien4fic  team-­‐building                        

Images:    Bluedarkat  “psychedelic  elephant  pop  art  design  .  Pixgood  “circuit  board  wall  art”.  .