Clinical Research and Evidence-based Medicine: Engaging Consumers and the Community to Improve Research Flashcards
What is a consumer?
Patients
Carers
Health care providers
What is a consumer representative?
A member of a committee, steering group or similar who voices the consumer perspective
Consumer advocates
What is a community?
Group of people sharing a common interest but not necessarily a common geographic location
Who are stakeholders?
Individual or group from within or outside the organisation who has a key interest in the research
What are the benefits of engaging communities and consumers to improve research?
From researchers perspective:
A push from funding bodies; changing funding rules now requires evidence of consumer and community engagement to qualify for research support.
From community standpoint:
a means of achieving insight into where public funding goes
What are the reasons for engaging communities and consumers for research?
Consumer and community participation can help or enhance quality of research
Current funding and policies often require some form of participation
Accreditation requirements may include consumer and community participation
Human research ethics committees may require evidence of participation
Participation can help empower consumers and/or community members
Involvement of consumers can increase transparency in using funding.
What level of consumer involvement is required by NHMRC?
NHMRC requires successful grant applicants to outline their plans for accountability and results dissemination to participants and the community.
Research within aboriginal communities has specific requirements about participation.
How does the NHMRC ensure that communities and consumers are participating in research?
There are written policies to ensure adherence to the statement on consumer and community participation
How are indigenous populations approached differently to other populations?
In addition to NHMRC community requirements, aboriginal cultural principles and values are taken into account.
What benefit does participation of consumers provide?
Consumers/community members can:
Acquire new skills and knowledge
Become strong advocates for all aspects of research
How are consumers engaged?
Depends on research type being done
First step is to know why consumers/community groups are needed
Knowing this will clarify who to involve, how to go about it and when to call them in.
Why are consumers/community groups needed?
Ensure research is relevant
Accountability for public investment
Concerns about community respect/sensitivities
Want to maximise translation into practice
How should customers be engaged?
Few things to be considered are:
Time
Budget
Support from senior staff
Training
What is the ladder of participation for regarding consumers?
Consumers can Lead the research: Identify what needs to be done and set appropriate research agenda.
Researchers can be equal in partnership with consumers to plan, undertake, and/or disseminate the results of research
Consumers/community can advise researchers about how to recruit participants or how to disseminate results.
Consumers/community can be consulted about a research or study plan and seek their views about it.
Researchers can make information about research available to consumers or community members.
Is the ladder of community engagement hierarchical?
No, different levels of involvement depend on type of research and context.
