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    

About  ISCRR    

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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.  

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Fewer and less severe injuries and diseases

Financial sustainability

Greater health, vocational and

social outcomes

The best possible client

experience

High  quality,  grounded  research  

Building  a  relevant  evidence  base  

Evidence  dissemina:on  and  transla:on  

Informing  and  influencing    policy  &  prac:ce  

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Driving  posi:ve  change  …  

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  

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Built    Environment  

Assis0ve  Technology  

Support  Services  

INDEPENDENCE  

By  improving  the  Built  Environment    

  we  can  improve  

•  Physical  access  inside  and  outside  the  home  

•  Geographic  Loca:on    

•  Community  Infrastructure  

•  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  

Improving  Support  Services  

Improving  the  quality  and  efficiency  of    paid  support  services  

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    

•  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

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Consumer  engagement  

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Consumer  (end-­‐user)  engagement  in  research  

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Researcher  

Ownership  of  findings  and  interpreta:on  

Choice  of  methods  

Choice  of  topic  

Tradi:onal  research  paradigm  

A  con:nuum  of  engagement  and  empowerment  

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Increasing  choice  and  control  of  the  consumer  

From:  

Patronising    and  paternalism  …  

…  Par0cipa0on    and  partnership  

To:  

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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”  

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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.  

Building  into  research  …  

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     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  

Engagement  forums  

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•  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  

Apprecia:ve  enquiry  

Engaging  people  with  lived  experience  to  drive  posi:ve  change  …  

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High  quality,  grounded  research  

Building  a  relevant  evidence  base  

Evidence  dissemina:on  and  transla:on  

Informing  and  influencing    policy  &  prac:ce  

Our  scorecard  

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Increasing  choice  and  control  of  the  consumer  

…  Par0cipa0on    and  partnership  

To:  From:  

Patronising    and  paternalism  …  

Next  steps?