title: Integrating consumer engagement in health and medical research - an Australian framework.
abstract: BACKGROUND
  Quality practice of consumer engagement is still in its infancy in many sectors of medical research. The South Australian Health and Medical Research Institute (SAHMRI) identified, early in its development, the opportunity to integrate evidence-driven consumer and community engagement into its operations.
  
  
  METHODS
  SAHMRI partnered with Health Consumers Alliance and consumers in evidence generation. A Partnership Steering Committee of researchers and consumers was formed for the project. An iterative mixed-method qualitative process was used to generate a framework for consumer engagement. This process included a literature review followed by semi-structured interviews with experts in consumer engagement and lead medical researchers, group discussions and a consensus workshop with the Partnership Steering Committee, facilitated by Health Consumer Alliance.
  
  
  RESULTS
  The literature revealed a dearth of evidence about effective consumer engagement methodologies. Four organisational dimensions are reported to contribute to success, namely governance, infrastructure, capacity and advocacy. Key themes identified through the stakeholder interviews included sustained leadership, tangible benefits, engagement strategies should be varied, resourcing, a moral dimension, and challenges. The consensus workshop produced a framework and tangible strategies.
  
  
  CONCLUSIONS
  Comprehensive examples of consumer participation in health and medical research are limited. There are few documented studies of what techniques are effective. This evidence-driven framework, developed in collaboration with consumers, is being integrated in a health and medical research institute with diverse programs of research. This framework is offered as a contribution to the evidence base around meaningful consumer engagement and as a template for other research institutions to utilise.
authors.affiliation: South Australian Health and Medical Research Institute (SAHMRI), North Terrace, Adelaide, South Australia, 5000, Australia. caroline.miller@sahmri.com.|School of Public Health, University of Adelaide, Adelaide, Australia. caroline.miller@sahmri.com.
authors.forename: Caroline L
authors.identifier: http://orcid.org/0000-0001-9723-8047
authors.initials: CL
authors.lastname: Miller
authors.affiliation: South Australian Health and Medical Research Institute (SAHMRI), North Terrace, Adelaide, South Australia, 5000, Australia.|Samson Institute, University of South Australia, Adelaide, Australia.
authors.forename: Kathy
authors.initials: K
authors.lastname: Mott
authors.affiliation: Health Consumers Alliance of South Australia, Level 1, 12 Pirie Street, Adelaide, South Australia, 5000, Australia.
authors.forename: Michael
authors.initials: M
authors.lastname: Cousins
authors.affiliation: Health Consumers Alliance of South Australia, Level 1, 12 Pirie Street, Adelaide, South Australia, 5000, Australia.
authors.forename: Stephanie
authors.initials: S
authors.lastname: Miller
authors.affiliation: , 320 Arthur Street, Penola, South Australia, 5277, Australia.
authors.forename: Anne
authors.initials: A
authors.lastname: Johnson
authors.affiliation: Health Consumers Alliance of South Australia, Level 1, 12 Pirie Street, Adelaide, South Australia, 5000, Australia.
authors.forename: Tony
authors.initials: T
authors.lastname: Lawson
authors.affiliation: South Australian Health and Medical Research Institute (SAHMRI), North Terrace, Adelaide, South Australia, 5000, Australia.
authors.forename: Steve
authors.initials: S
authors.lastname: Wesselingh
mesh_terms: D035843:Biomedical Research / Q000458:organization & administration*; D054976:Clinical Governance; D003256:Community Participation; D055317:Evidence-Based Practice; D006801:Humans; D036301:Qualitative Research; D013021:South Australia
keywords: Community involvement; Community participation; Consumer engagement