Involving consumers in research Flashcards
Consumer
- Any individual that uses a health service
Consumer representative
Member of a committee or steering group who voices the consumer perspective
Community
Group of people sharing a common interest and not necessarily a geographical location
Stakeholders
Individual group from within or outside of an organisation that has a key interest in research & the decisions involved
Why is consumer involvement important
- Offers perspective
- Prioritises decisions
- Adds value to research
- Is often required by fundings (NHMRC) and HRECs
Without involvement: outcome not accepted by community, assumptions not challenged, money/time wasted, application rejected by HREC
7 steps involved in consumer involvement
- Why are they being involved
- What stages
- What level of particiation
- A plain language summary
- How will they be involved
- How will it be evaluated
- What barriers and how will they be addressed
(1) Why
- Offer perspective & ensure respect
- Make relevant
- Show accountabiltity to funders
(2) stages of involvement
- What to research (steering group, consultation)
- How to conduct (comments on applications)
- Conduction (active researchers/buddy)
- Disseminating results (summaries, articles)
- Future research (advisory council/consulation)
(3) level of participation
- High: equal partners (research buddy)
- Low: advise and consult, or just inform
(4) plain language summary
For the consumers to help with participation
(5) methods
same as stages
* steering groups, comments, research buddies, councils, forums
(6) evaluation
Process: were they able to contribute, were their expectations met, were they budgeted for
Impact: what change occurred, did involvement and knowledge increase
(7) Barriers to involvement
- Lack of time/money: apply for funding
- Lack of training or consumer knowledge: discuss needs and provide access to training
- Lack of evidence for benefits: use other country publications
- Language and terminology: plain language without jargon
