Utah Center of Excellence ELSI Research (UCEER) - Design Document

The main goal of this project is to collaborate between UCEER and EAE program to develop an app that can help ethical decision making in prenatal screening so that people can make educated decisions on their babies' future health.

UCEER  Project   A  Project  with  EAE  and  UCEER  at  the  University  of  Utah   Design  Document     By  Zeph  Fagergren                   Table  of  Contents   • App  Overview   Title   Design  Goal   Target  Audience   App  Terms   Scope   App  Flow   o App  Mock  Up   o Start  Screen   o Declaration  Questions  Screen   o Video  Screen   o Outcome  Questions  Screen   o Binary  Questions  Screen   o Results  /  Discovery  Screen   o Thank  You  Screen   o Upload  to  a  Server   Art  Styles   o Overall  Art  Style   App  Hardware   o Devices   o Inputs   Mechanics   o o o o o • • • • • • Development  Kit  /  Tool  Creation     Looking  Forward                     App  Overview   Title     UCEER  (Working  Title)       Design  Goal     The  main  goal  of  this  project  is  to  collaborate  between  the  UCEER  and  EAE   program  to  develop  an  app  that  can  help  ethical  decision  making  in  prenatal   screening  so  that  that  people  can  make  educated  decisions  on  their  babies'   future  health.       Target  Audience   • • • Parents  concerned  with  the  future  of  their  babies'  health   • • Bob  Wong   Funders  of  the  P21  Grant   Students  in  the  Philosophy  and  Social  Work  Departments  (30-­‐50   Students).     Executive  Producers:  Roger  Altizer,  Amy  Adkins  and  Jose  Zagal   App  Terms  (Alphabetical  Order)   • • • • • • • • • • • • BINARY  QUESTIONS  SCREEN:  OVERALL  APP:    This  is  the   SCREEN  that  will  ask  the  player  to  answer  binary  questions   that  focus  on  giving  us  specific  answers  to  how  groups  of   people  feel  about  two  different  scenarios.   DATA:  The  information  collected  from  the  USER  by  having   them  answer  questions  through  the  use  of  the  app.   DECLARATION  QUESTIONS  SCREEN:  The  SCREEN  where  the   USER  will  declare  who  they  are  by  answering  a  set  of  questions.   DROPBOX:  Dropbox.com  is  the  service  space  where  all  the   DATA  will  be  stored  after  a  USER  completes  a  FULL  SESSION.   FULL  SESSION:  The  experience  as  a  whole  for  the  USER  from   the  point  of  starting  the  app  to  the  point  of  closing  the  app.   IPAD  -  The  hardware  will  be  used  as  the  target  hardware   device  for  this  app.     OUTCOME  QUESTIONS  SCREEN:  This  SCREEN  will  be   displayed  to  the  USER  after  the  PRENATAL  SCREENING  VIDEO   plays  and  the  USER  is  automatically  guided  to  answering   outcome  questions  from  the  video  on  this  screen.   OVERALL  APP:    The  entire  app  and  all  the  content  it  contains.   PRENATAL  SCREENING  VIDEO:  The  main  video  that  will  be   played  for  the  USER  when  they  are  navigating  the  app.   SCREENS:  Stages  of  the  hierarchy  the  USER  will  be  guided   through  that  will  lead  them  from  start  to  finish  of  interaction   with  the  OVERALL  APP.   START  SCREEN:  A  SCREEN  where  the  USER  will  start  when   the  app  is  first  launched.   THANK  YOU  SCREEN:  A  SCREEN  where  the  USER  can  view   content  that  shows  how  much  we  appreciate  the  USER  for   going  through  a  FULL  SESSION  of  the  app.   • •   USER:    The  person  who  is  (or  will  be)  using  the  app.   VIDEO  SCREEN:  A  SCREEN  that  will  play  the  PRENATAL   SCREENING  VIDEO.   Scope   The  OVERALL  APP  will  have  one  cohesive  art  style  that  will  contain  all  the   content  the  user  will  see  in  the  app.  This  art  style  will  have  a  unique  and   attractive  look  that  will  lie  over  the  mechanics  of  everything  within  the   OVERALL  APP.    The  app  will  be  engineered  so  that  the  USER  will  be  guided   through  a  hierarchy  of  screens  from  start  until  finish  where  DATA  will  be   collected  and  stored  to  a  SERVER  for  future  analysis.  The  OVERALL  APP  will   have  about  6  SCREENS  the  USER  will  be  guided  through  that  will  lead  them   through  the  viewing  of  the  PRENATAL  SCREENING  VIDEO  and  a  few  sets  of   questions  that  shouldn't  take  the  USER  longer  then  15  to  20  minutes  to   complete  a  FULL  SESSION.   App  Flow   App  Mock  Up           Start  Screen   The  START  SCREEN  will  be  the  SCREEN  that  the  USER  will  start  at  when  the   app  launches.  There  will  be  a  specific  art  style  that  the  app  will  use  and  this  is   the  first  time  the  USER  will  experience.  The  app  will  begin  once  the  USER   interacts  with  a  button  that  says,  "START."     Declaration  Questions  Screen   (Green  Questions)     These  are  the  questions  the  USER  will  answer  that  will  tell  us  how  the  USER   declares  himself  or  herself  as  a  person.  These  are  questions  that  give  us   information  about  the  USER  that  they  cannot  control  about  themselves.   Here  are  the  questions  and  choices  that  will  be  asked  in  this  SCREEN:     Gender:     What  is  your  gender?       Choices:   -­‐ -­‐ -­‐ Male   Female     Refuse  to  answer  question     Age:     How  old  are  you  (in  years)?         Choices:   -­‐ The  USER  will  input  their  age  by  selecting  their  age   number  from  a  dropdown  menu.   Education:     What  is  your  highest  level  of  education  you  have  completed?       Choices:   -­‐ Some  high  school  or  less.   -­‐ -­‐ -­‐ -­‐ -­‐ -­‐ High  school  diploma  or  GED   Some  College   Associates  Degree   Bachelors  Degree   Graduate  Degree   Refuse  to  answer  question   Children:     How  many  children  have  you  had,  not  including  still  births?       Choices:   -­‐ -­‐ -­‐ -­‐ -­‐ -­‐ -­‐ One   Two   Three   Four   More  than  four   None   Refuse  to  answer  question   Ethnicity:     Are  you  of  Hispanic  or  Latino  descent?       Choices:   -­‐ -­‐ -­‐ Yes   No   Refuse  to  answer  question   Race:   Which  of  the  following  best  describes  your  race?     Choices:     -­‐ -­‐ -­‐ -­‐ -­‐ -­‐ -­‐ White   Black  or  African  American   American  Indian  or  Alaska  Native   Asian   Native  Hawaiian  &Other  Pacific  Islander   Other   Refuse  to  answer  question   Conservative  vs.  Liberal:     In  politics  today,  would  you  say  you  are?       Choices:     -­‐ -­‐ -­‐ -­‐ -­‐ -­‐ Very  conservative   Somewhat  conservative   Moderate   Somewhat  liberal   Very  liberal   Refuse  to  answer  question   Religious  Service:   Aside  from  weddings  and  funerals,  how  often  do  you  attend  religious   services?     Choices:   -­‐ -­‐ -­‐ -­‐ -­‐ -­‐ More  than  once  a  week   Once  a  week   Once  or  twice  a  month   A  few  times  a  year   Seldom  or  never   Refuse  to  answer  question   Income:   Last  Year,  what  was  your  total  family  income  from  all  sources,  before   taxes?     Choices:   -­‐ -­‐ -­‐ -­‐ -­‐ -­‐ -­‐ -­‐ Less  than  $20,000   20  to  under  $30,000   30  to  under  $40,000   40  to  under  $50,000   50  to  under  $75,000   75  to  under  $100,000   100  to  under  $150,000   $150,000  or  more         Video  Screen   The  VIDEO  SCREEN  is  the  screen  that  will  play  the  PRENATAL  SCREENING   VIDEO.    This  SCREEN  will  only  show  a  place  where  the  video  will  play  and  be   contained  by  art  from  our  art  style.  The  video  will  not  play  until  the  user  taps   on  the  video  to  make  the  video  play.  The  play  video  symbol  will  be  on  the   area  of  the  video  so  that  the  USER  knows  to  tap  that  area  to  make  the  video   play.     Outcome  Questions  Screen   (Yellow  Questions)   These  are  the  questions  the  USER  will  answer  that  will  tell  us  how  the  USER   feels  about  the  PRENATAL  SCREENING  VIDEO  as  a  person.     Here  are  the  questions  and  choices  that  will  be  asked  in  this  SCREEN:   Question  1:   How  supportive  are  you  of  Health  Departments  doing  these  blood   tests  on  all  new  babies?     Choices:   -­‐ -­‐ -­‐ -­‐ -­‐ -­‐ Very  supportive   Somewhat  supportive   Somewhat  not  supportive   Not  supportive   Don't  Know   Refuse  to  answer  question   Question  2:   Do  you  think  it  is  alright  that  these  tests  are  done  without  permission   from  the  parents?     Choices:   -­‐ -­‐ -­‐ -­‐ -­‐ -­‐ Definitely  alright   Probably  alright   Probably  not  alright   Definitely  not  alright   Don't  know   Refuse  to  answer  question   Questions3:   How  concerned  would  you  be  if  the  Health  Departments  saved  the   leftover  blood  samples  from  babies  after  the  testing  is  done?     Choices:   -­‐ -­‐ -­‐ Very  concerned   Somewhat  concerned     Only  a  little  concerned     -­‐ -­‐ -­‐ Not  at  all  concerned   Don't  know   Refuse  to  answer  question   Question  4:   In  your  opinion,  should  Health  Departments  use  these  leftover  blood   samples  to  maintain  the  quality  of  existing  tests  for  newborns?     Choices:   -­‐ -­‐ -­‐ -­‐ -­‐ -­‐ Definitely  alright   Probably  alright     Probably  not  alright   Definitely  not  alright   Don't  know   Refuse  to  answer  question   Question  5:   Do  you  think  it  would  be  alright  for  these  leftover  blood  sample  to  be   used  for  important  research  on  diseases  that  affect  mothers  and   babies?     Choices:   -­‐ -­‐ -­‐ -­‐ -­‐ -­‐ Definitely  alright   Probably  alright     Probably  not  alright   Definitely  not  alright   Don't  know   Refuse  to  answer  question   Question  6:   Do  you  think  it  would  be  alright  for  these  leftover  blood  samples  to  be   used  for  important  research  on  diseases  that  affect  the  general  public?     Choices:   -­‐ -­‐ -­‐ -­‐ -­‐ -­‐ Definitely  alright   Probably  alright     Probably  not  alright   Definitely  not  alright   Don't  know   Refuse  to  answer  question   Binary  Questions  Screen   (Red  Questions)   These  are  the  binary  questions  the  USER  will  answer  that  will  allow  us  to  test   two  specific  questions  against  each  other.  This  will  allow  us  to  focus  on   DATA  to  check  what  answers  different  groups  of  people  usually  choose.   Here  are  the  questions  and  choices  that  will  be  asked  in  this  SCREEN:   Binary  Question  1:   It  may  be  very  difficult  and  costly  to  find  many  parents  after  several   years:     Choices:   -­‐ -­‐ -­‐ With  privacy  safeguards  in  place,  allow  the  samples   to  be  used  for  important  health  research   Do  not  allow  the  samples  to  be  used  for  important   health  research   Refuse  to  answer  question   Binary  Question  2;     Do  you  think  it  is  more  important  to:       Choices:   -­‐ -­‐ -­‐ Provide  greater  privacy  protection   Allow  notification  of  parents  if  something  important   is  learned   Refuse  to  answer  question   Binary  Question  3:     What  do  you  think  is  the  best  thing  to  do?       Choices:   -­‐ -­‐ -­‐   Keep  samples  only  if  parents  sign  a  form   Keep  samples  unless  parents  contact  the  Health   Department  to  have  them  destroyed   Refuse  to  answer  question     Results  /  Discovery  Screen   This  SCREEN  will  be  used  as  the  section  of  the  app  where  the  USER  can   manipulate  sliders,  buttons,  and  other  interactive  content  to  explore  and  play   with  DATA  to  show  how  other  people  answered  the  same  questions  they   were  asked  prior  to  the  OPEN-­‐ENDED  QUESTIONS  SCREEN.  This  will  be   where  the  USER  should  have  the  most  fun  with  the  app  in  creative  ways   provided  to  them  in  this  SCREEN.   Open-­‐Ended  Questions  Screen   This  SCREEN  will  be  used  as  another  chance  to  capture  DATA  from  the  USER   about  their  experience  and  opinions  while  using  the  app.  The  objective  of  this   SCREEN  is  to  give  the  USER  some  open-­‐ended  questions  that  they  can   answer  by  talking  to  the  IPAD.    We  will  use  the  IPAD'  S  camera  API  to  record   a  video  of  the  USER  speaking  their  answers  to  the  open-­‐ended  questions.   After  the  USER  answers  all  these  open-­‐ended  questions,  they  will   automatically  be  guided  to  the  last  SCREEN  of  the  app.   Thank  You  Screen   This  SCREEN  will  be  used  as  a  way  to  say,  "Thank  you"  to  the  USER  as  well  as   give  them  a  call-­‐to-­‐action  for  more  information  or  updates  in  the  future   about  this  app.  The  USER  will  visually  see  content  that  tells  them  thank  you   and  then  they  will  see  links  where  they  can  find  more  information.  These   links  will  include  things  such  as  a  website  link  to  UCEER  and  the  EAE   program,  social  media  websites  created  for  the  app,  or  any  other  call-­‐to-­‐ action  needed.   Upload  to  a  Server   After  the  USER  has  completed  a  FULL  SESSION,  all  the  DATA  collected  from   the  questions  they  answered  will  be  move  from  being  locally  stored  in  the   app  to  being  stored  to  online  in  DROPBOX.   Art  Styles   Overall  Art  Style     Pending  approval  from  Bob  Wong,  Roger  Altizer,  Jose  Zagal  and  Amy  Adkins,   these  are  the  three  style  guides  that  will  be  used  for  the  visual  look  of  the   app:         App  Hardware   Devices     We  will  be  developing  this  app  on  IOS  so  that  the  user  can  use  this  app  on  an   IPAD  that  is  supplied  to  them  when  they  are  going  to  use  the  app.     Inputs   All  inputs  for  this  app  will  be  touch  based.  The  user  will  use  his  or  her  hand   to  start  the  video,  change  screens  and  use  all  other  mechanics  in  the  app.   Mechanics   1. User  Interface  Navigation:   a. This  will  be  the  feature  that  will  allow  the  USER  to  navigate  the   app  and  be  guided  all  way  from  the  app  flow  of  the  START   SCREEN  through  the  THANK  YOU  SCREEN.   2. DATA  Input     a. This  will  be  the  feature  that  will  allow  the  USER  to  physically   input  DATA  into  the  app  by  touch  and  allow  us  to  collect  that   DATA  to  be  analyzed  for  a  later  time.   3. Video  Playback   a. This  is  the  feature  that  will  allow  the  PRENATAL  SCREENING   VIDEO  to  play  when  the  user  reaches  the  VIDEO  SCREEN.  The   USER  will  press  the  play  button  on  the  spot  the  PRENATAL   SCREENING  VIDEO  is  located  at  on  the  VIDEO  SCREEN  to  start   the  video.   4. Video  Recording   a. This  is  the  feature  that  will  turn  on  the  video  recording  in  the   IPADS  camera  to  allow  us  to  record  the  answers  and  reactions   to  the  open-­‐ended  questions  on  the  OPEN-­‐ENDED  QUESTIONS   SCREEN.     5. DATA  Collection   a. This  is  the  feature  that  will  create  a  packet  with  all  the  answers   to  the  questions  the  USER  was  asked  during  the  FULL  SESSION   of  the  app.  This  includes  the  DATA  from  all  the  SCREENS  that   ask  the  user  questions.   6. Uploading  DATA  to  a  Web  Server.   a. This  is  the  feature  that  will  be  used  after  the  USER  completes  a   FULL  SESSION  and  is  finished  with  the  app.  This  will  allow  the   all  the  DATA  collected  while  the  USER  was  interacting  with  the   app  to  be  pushed  up  to  an  online  Web  Server  (DROPBOX)  that   can  be  accessed  later  for  analysis.   7. Dynamic  Data  Visualizations     a. This  will  be  the  feature  that  allows  the  user  to  see  and  interact   with  different  information  within  the  app.  Examples  are  graphs,   charts,  images  or  animations.   Development  Kit  /  Tool  Creation     Based  off  knowledge  that  was  found  from  doing  research  on  the  best  way  to  develop   for  this  project,  we  found  that  the  following  will  be  the  technology  used  to  create  the   app:   8. Technology:  iOS  SDK   9. Target  Device:  IPAD   10. Development  Environment:  Xcode   11. Programming  Language:  Objective  C   12. Target  Operating  System:  iOS7   a. Compatible  Devices  with  iOS7   i. IPAD  2   ii. Third  Generation  IPAD   iii. Fourth  Generation  IPAD   iv. IPAD  Mini   Looking  Forward   In  the  future,  given  additional  time  and  additional  resources,  we  believe  that  we   could  add  functionally  and  features  to  this  iteration  of  the  app,  which  would  greatly   enhance  the  current  USER  experience  and  more  thoroughly  deliver  on  the  overall   intent  of  the  app  and  its  design.   Here  are  more  potential  features,  content  or  scenarios  that  could  happen  or  be   added  to  this  app  and  its  design  in  the  future:   1. More  DATA  collection  to  be  analyzed  from  the  USER  experience  the  USER   has  while  interacting  with  the  app.     2. Grow  and  test  the  app's  potential  demographics.   3. More  projects  between  EAE  and  UCEER.