Hearing	
  the	
  voice	
  of	
  people	
  with	
  high	
  and	
  complex	
  care	
  needs	
  
in	
  research:	
  
What	
 ...
About	
  ISCRR	
  	
  
2	
  
Our	
  mission	
  …	
  	
  
To	
  collabora)vely	
  develop,	
  
execute	
  and	
  translate	
  the	
  
highest	
  quality...
High	
  quality,	
  grounded	
  
research	
  
Building	
  a	
  relevant	
  
evidence	
  base	
  
Evidence	
  dissemina:on	...
About	
  
•  The	
  TAC	
  is	
  a	
  Victorian	
  Government-­‐owned	
  organisa:on	
  whose	
  
role	
  is	
  to	
  prom...
Built	
  	
  
Environment	
  
Assis0ve	
  
Technology	
  
Support	
  
Services	
  
INDEPENDENCE	
  
By	
  improving	
  the	
  Built	
  Environment	
  	
  
	
   we	
  can	
  improve	
  
•  Physical	
  access	
  inside	
  an...
•  Personal	
  safety	
  –	
  medical	
  alerts	
  /	
  mo:on	
  sensors	
  
•  Simple	
  controls	
  and	
  automated	
  ...
Improving	
  Support	
  Services	
  
Improving	
  the	
  quality	
  and	
  efficiency	
  of	
  	
  
paid	
  support	
  servi...
The	
  SmILE	
  research	
  projects	
  have	
  to	
  be	
  integrated	
  –	
  
None	
  	
  of	
  these	
  elements	
  	
 ...
•  Universi:es	
  with	
  representa:ves	
  of	
  the	
  disability	
  sector,	
  the	
  health	
  
sector,	
  the	
  TAC	...
13	
  
Consumer	
  engagement	
  
14	
  
Consumer	
  (end-­‐user)	
  engagement	
  in	
  research	
  
15	
  
Researcher	
  
Ownership	
  of	
  
findings	
  and	
  
interpreta:on	
  
Choice	
  of	
  
methods	
  
Choice	
  of	
...
A	
  con:nuum	
  of	
  engagement	
  and	
  empowerment	
  
16	
  
Increasing	
  choice	
  and	
  control	
  of	
  the	
  ...
17	
  
Defining	
  user	
  engagement	
  
“a	
  quality	
  of	
  user	
  experience	
  characterized	
  by	
  
adributes	
  of	
  ...
Building	
  into	
  research	
  …	
  
19	
  
	
  	
  	
  quality	
  of	
  user	
  experience	
  characterized	
  
by	
  ad...
Engagement	
  forums	
  
20	
  
•  What	
  do	
  people	
  need?	
  
• Close	
  to	
  family	
  and	
  supports	
  
• Access	
  to	
  community	
  
• “lik...
Apprecia:ve	
  enquiry	
  
Engaging	
  people	
  with	
  lived	
  experience	
  to	
  drive	
  
posi:ve	
  change	
  …	
  
23	
  
High	
  quality,	
 ...
Our	
  scorecard	
  
24	
  
Increasing	
  choice	
  and	
  control	
  of	
  the	
  consumer	
  
…	
  Par0cipa0on	
  	
  
a...
Next	
  steps?	
  
Clarissa Martin - The Institute for Safety, Compensation and Recovery Research - Hearing the Voice of People with High & C...
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Clarissa Martin - The Institute for Safety, Compensation and Recovery Research - Hearing the Voice of People with High & Complex Care Needs in Research: What is Meaningful Engagement & How Can it be Done?

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Clarissa Martin delivered the presentation at the 2014 Younger People with very High & Complex Care Needs Conference.

The 4th Annual Younger People with very High & Complex Care Needs Conference focused on topics such as report on Summer Foundation’s preliminary findings from NDIS Launch sites in Barwon & the Hunter Valley, identify policy & practice opportunities & barriers for YPINH that arise from the NDIS.

For more information about the event, please visit: http://www.informa.com.au/youngerpeopleconference14

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Clarissa Martin - The Institute for Safety, Compensation and Recovery Research - Hearing the Voice of People with High & Complex Care Needs in Research: What is Meaningful Engagement & How Can it be Done?

  1. 1. Hearing  the  voice  of  people  with  high  and  complex  care  needs   in  research:   What  is  meaningful  engagement  and  how  can  it  be  done?   Dr  Clarissa  Mar:n   Health  and  Disability  Services  Delivery  Program    
  2. 2. About  ISCRR     2  
  3. 3. Our  mission  …     To  collabora)vely  develop,   execute  and  translate  the   highest  quality  research   which  helps  the  TAC  and  the   VWA  op)mise  their   outcomes  and  those  of  their   clients.   3   Fewer and less severe injuries and diseases Financial sustainability Greater health, vocational and social outcomes The best possible client experience
  4. 4. High  quality,  grounded   research   Building  a  relevant   evidence  base   Evidence  dissemina:on   and  transla:on   Informing  and  influencing     policy  &  prac:ce   4   Driving  posi:ve  change  …  
  5. 5. About   •  The  TAC  is  a  Victorian  Government-­‐owned  organisa:on  whose   role  is  to  promote  road  safety,  improve  the  State's  trauma   system  and  support  those  who  have  been  injured  on  our   roads   –  People  living  with  disability  caused  by  road  trauma  (TBI  and  SCI)  are   eligible  for  lifelong  support  services,  funded  by  the  TAC   –  As  a  purchaser  of  services  for  their  clients,  the  TAC  has  a  vested   interest  in  the  development  of  best  prac:ce  disability  support  models   and  service  provision   5  
  6. 6. Built     Environment   Assis0ve   Technology   Support   Services   INDEPENDENCE  
  7. 7. By  improving  the  Built  Environment       we  can  improve   •  Physical  access  inside  and  outside  the  home   •  Geographic  Loca:on     •  Community  Infrastructure  
  8. 8. •  Personal  safety  –  medical  alerts  /  mo:on  sensors   •  Simple  controls  and  automated  facili:es   •  Improved  access  to  technology  to  reduce  support   needs   •  Reducing  service  costs   •  Using  informa:on  technology  to  improve  co-­‐ ordina:on  of  disability  and  health  services  in  the   community   Iden:fying    and  assessing     Assis:ve  technology  op:ons  
  9. 9. Improving  Support  Services   Improving  the  quality  and  efficiency  of     paid  support  services  
  10. 10. The  SmILE  research  projects  have  to  be  integrated  –   None    of  these  elements     Built  Environment     Assis0ve  Technology  and     Support  Services   can  address  people’s  needs  in  isola?on    
  11. 11. •  Universi:es  with  representa:ves  of  the  disability  sector,  the  health   sector,  the  TAC     •  and  directly  with  people  with  disability  and  their  carers   Working  with  people  with  lived  experience  to  understand  their  individual   needs  and  priori:es   SmILE is a co-designed program
  12. 12. 13   Consumer  engagement  
  13. 13. 14   Consumer  (end-­‐user)  engagement  in  research  
  14. 14. 15   Researcher   Ownership  of   findings  and   interpreta:on   Choice  of   methods   Choice  of   topic   Tradi:onal  research  paradigm  
  15. 15. A  con:nuum  of  engagement  and  empowerment   16   Increasing  choice  and  control  of  the  consumer   From:   Patronising     and  paternalism  …   …  Par0cipa0on     and  partnership   To:  
  16. 16. 17  
  17. 17. Defining  user  engagement   “a  quality  of  user  experience  characterized  by   adributes  of  challenge,  posi:ve  affect,   endurability,  aesthe:c  and  sensory  appeal,   aden:on,  feedback,  variety/novelty,   interac:vity,  and  perceived  user  control”   18   O'Brien,  H.  L.,  &  Toms,  E.  G.  (2008).  What  is  user  engagement?  A  conceptual  framework  for  defining  user  engagement   with  technology.  Journal  of  the  American  Society  for  Informa?on  Science  and  Technology,  59(6),  938-­‐955.  
  18. 18. Building  into  research  …   19        quality  of  user  experience  characterized   by  adributes  of  challenge,  posi:ve  affect,   endurability,  aesthe:c  and  sensory  appeal,   aden:on,  feedback,  variety/novelty,   interac:vity,  and  perceived  user  control   …  with  people  with  lived  experience  
  19. 19. Engagement  forums   20  
  20. 20. •  What  do  people  need?   • Close  to  family  and  supports   • Access  to  community   • “like  minded”  people  living   together   • Communal  area  for  socialisa:on   • Balance  of  independence  and   privacy   • Being  connected  to  what  they   know  (e.g.  people,  places)   • In-­‐home  care/   respite  op:ons   • Having   somewhere  for   a  carer  to  stay   overnight   People  with  lived  experience  forum  29  August  2013   Thank  you  to  Brainlink  for  suppor)ng  this  forum  
  21. 21. Apprecia:ve  enquiry  
  22. 22. Engaging  people  with  lived  experience  to  drive   posi:ve  change  …   23   High  quality,  grounded   research   Building  a  relevant   evidence  base   Evidence  dissemina:on   and  transla:on   Informing  and  influencing     policy  &  prac:ce  
  23. 23. Our  scorecard   24   Increasing  choice  and  control  of  the  consumer   …  Par0cipa0on     and  partnership   To:  From:   Patronising     and  paternalism  …  
  24. 24. Next  steps?  
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