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  • 1. Involving  Consumers  in   Systema3c  Reviews   Julia  Kreis   Harkness/Bosch  Fellow   Johns  Hopkins  Bloomberg  School  of  Public  Health   Support for this research was provided by The Institute of Medicine and The Commonwealth Fund. The views presented here are those of the author and should not be attributed to The Institute of Medicine, The Commonwealth Fund or its respective directors, officers, or staff.
  • 2. Consumer  involvement  is  a  priority  for     Compara-ve  Effec-veness  Research   IOM  Report  on  Ini-al  Na-onal  Priori-es     in  Compara-ve  Effec-veness  Research  (2009):      “the  CER  program  should  fully  involve     consumers,  pa:ents,  and  caregivers     in  key  aspects  of  CER,     including  strategic  planning,  priority  se<ng,  research  proposal   development,  peer  review,  and  dissemina:ons”  
  • 3. What  do  we  know  about     consumer  involvement  in  systema-c  reviews?     How  are  “consumers”  defined  in  the  literature?       What  is  the  ra-onale  for  involving  consumers  in  health  research?     What  are  frameworks  to  describe  consumer  involvement  in   health  research?     How  are  consumers  currently  involved  in  systema-c  reviews?     Which  issues  deserve  further  aNen-on?  
  • 4. How  are  “consumers”  defined     in  the  literature?   Cochrane  Glossary:     “someone  who  uses,  is  affected  by,  or  who  is  en3tled  to  use  a   health-­‐related  service”   CCNet:       “Consumer  in  Cochrane”  =  “an  individual  who  has  unique  personal   experiences  that  allow  him  or  her  to  provide  an  effec-ve  healthcare   user/receiver  perspec-ve  to  a  systema-c  review  ques-on”   A.  Herxheimer:     “informed  pa3ent  who  has  taken  the  trouble  to  learn  about   research  methods  and  can  contribute  insight  and  personal   experience  to  trial  design,  or  even  suggest  new  topics  for  research”  
  • 5. What  is  the  ra-onale  for   involving  consumers  in  health  research?   it  improves  the  quality  of   it  is  poli-cally  &  ethically   the  research  product   required   Perspec3ves:   “Consumerism”   “Empowerment”   Increase  consumers’   Enable  consumers  to  greater   sa-sfac-on  with  the  product   autonomy  in  decision  making   Different  status  of  consumers  within  a  research  project.   Different  methods  for  involvement.   Boote  J  et  al.  Consumer  involvement  in  health  research:  a  review  and  research  agenda.  Health  Policy.  2002;  61(2):213-­‐36.  
  • 6. What  are  frameworks  to  describe   consumer  involvement  in  health  research?   Consumer  control   “Consumers  designing,  undertaking  and   dissemina-ng  the  results  of  a  research  project”   Increasing   empowerment   Collabora3on   of  consumers   “Ac-ve,  on-­‐going  partnership”   within  the   research  process   Consulta3on   “Asking  consumers  for  their  views  and  using   these  views  to  inform  decision-­‐making”   Boote  J  et  al.  Consumer  involvement  in  health  research:  a  review  and  research  agenda.  Health  Policy.  2002;  61(2):213-­‐36.   Hanley  B  et  al.  Involving  the  Public  in  NHS,  Public  Health  and  Social  Care  Research:  Briefing  Notes  for  Researchers.  Eastleigh:   INVOLVE,  2003  
  • 7. How  are  consumers  currently  involved  in   systema-c  reviews?   Interviews  with  key  informants     •  of  15  selected  organiza-ons  that  conduct  and/or  commission   systema-c  reviews     •  in  the  United  States     •  and  Campbell  Collabora-on,  Cochrane  Collabora-on   Preliminary  results     •  Few  organiza-ons  of  the  sample  have  an  explicit  policy  to  involve   consumers   •  No  common  standard  of  involving  consumers  in  systema-c  reviews   •  Different  types  of  involvement:     aim  /  groups  of  consumers  involved  /  methods  of  involvement  
  • 8. Possible  aims  of  involving  consumers  in   systema-c  reviews   -­‐  from  the  interviews  -­‐   •  Increase  the  relevance  of  the  review     Quality   •  Increase  the  accessibility  of  the  review     •  Increase  the  acceptance  of  the  review  results     Percep-on   •  Increase  the  transparency,  public  trust  and   accountability  of  the  research  process     •  Promote  the  evidence-­‐based  approach   Cultural  changes   •  Establish  a  culture  of  knowledge-­‐exchange   between  researchers  and  consumers  
  • 9. Consulta3on   “Personal  Experience”   Aim:     Ensure  the  relevance  of  the  review:  understand  and  address  the   ques-ons  that  are  relevant  from  the  pa-ents’  perspec-ve   Who:   Pa-ents  with  a  personal  experience  of  the  target  condi-on   Pa-ent  representa-ves   Informal  caregivers,  families   How:     Interviews  or  focus  groups   Review  phase:   Development  of  drai  protocol   Perceived   impact:     Possibly  cri-cal  for  usefulness   Things  to  consider  (raised  by  the  interviewees):     •  Representa-veness?   •  Pa-ents  or  pa-ent  representa-ves?   •  Researchers’  interest  vs.  pa-ents’  interest?  
  • 10. Consulta3on   “Public  Comment”   Aim:     Increase  transparency,  public  trust  and  accountability   Who:   The  public   How:     Comment  on  drai  protocol  &  drai  review  via  website   Review  phase:   Drai  protocol  /  drai  review   Perceived   impact:   “Safeguard”  for  excep-onal  cases   Things  to  consider  (raised  by  the  interviewees):       •  How  are  comments  handled?  
  • 11. Collabora3on   “Stakeholder  Group”     Aim:     Increase  acceptance  of  the  review’s  results  and  of  the   evidence-­‐based  approach   Who:   Stakeholders,  i.e.  pa-ent/consumer  organiza-ons   How:     Stakeholder  advisory  groups   Review  phase:   Discuss    drai  protocol,  drai  review     Perceived   impact:   Helped  to  increase  acceptance     Things  to  consider  (raised  by  the  interviewees):     •  Collabora-on  with  stakeholders  vs.  integrity  of  research?     •  Person  with  media-ng  skills  between  researchers  and  stakeholders   available?  
  • 12. What  do  we  know  about     consumer  involvement  in  systema-c  reviews?      Consumers  are  currently  involved  in  a  variety  of  ways.     These  reflect  different  ra-onales  for  involving  consumers.      More  evidence  on  the  impact  is  desirable.  
  • 13. Which  issues  deserve  further  aNen-on?   Issues  for  CUE  to  discuss   •  Level  of  involvement    Which  level  of  involvement  is  preferred  from  a  consumer   perspec-ve?     •  Choosing  the  “right”  consumer  organiza3ons    What  if  a  consumer  organiza-on  is  not  dedicated  to  the   principles  of  evidence-­‐based  health  care?   •  Individuals  or  representa3ves    Should  consumers  be  involved  as  individuals  or  as   representa-ves  of  a  cons-tuency?  
  • 14. Thank  you.   jkreis@jhsph.edu