Involving people in research
Involving people in research is also known as consumer and community participation in health research. This is the term commonly used to describe the active involvement of consumers, community members and researchers working together to make decisions about health research.
Involving People in Research has been established to provide support to consumers, community members and researchers.
The University of Western Australia’s School of Population Health and the Telethon Institute for Child Health Research have developed a strong and sustainable consumer and community participation program which supports the active involvement of consumers and community members in all levels, and in all stages, of health research.
Our consumer and community participation program is aligned with the National Health and Medical Research Council and the Consumers’ Health Forum of Australia’s joint Statement on Consumer and Community Participation in Health and Medical Research (2002).
Consumers and community members have a unique and ‘lived experience’ perspective to contribute to health research. Increasing their participation will lead to health research being conducted that is more important and relevant to consumers and the community. It will also increase the potential for results to be translated into changes in policies and practice.
Interested in training? We conduct training workshops on implementing consumer and community participation for research and consumers.
In order for any application to be successful you will have to sign up to be a member of the Participation Network
Have your say about health research
We need community members to fill vacancies on a range of research committees. If you have an interest in working with researchers and links to health consumer and community groups, then we’d love to hear from you! Training provided.
Phone: 6488 8176 or 9489 7742 Email: [email protected]
Reading research – some basic guidelines
What is the source?
All media/online reports should clearly state the sources on which they are based i.e. the organisation that has conducted a study or the individual who is making a particular claim.
Sources should state:
- If the study has been published in a scientific journal.
- If the journal in question is ‘peer reviewed‘
- Whether the paper/article been scrutinised for errors and faults by other experienced scientists.
If such Information is absent, then the credibility of the article should be questioned immediately.
Research Data Australia
Research Data Australia (a service of the Australian National Data Service (ANDS)) is an Internet-based discovery service designed to provide rich connections between data, projects, researchers and institutions, and promote visibility of Australian research data collections in search engines.
Reviewing National Health and Medical Research Council (NHMRC) grant programme (28/1/16)
NHMRC’s CEO, Professor Kelso, has announced that there will be an over-arching review of the structure of NHMRC’s grant programme.
NHMRC awards grants worth around $800 million each year from the Medical Research Endowment Account (MREA). In recent years, rising application numbers to NHMRC schemes and rising costs of research have presented new challenges as we seek to support excellence across all research sectors – from knowledge creation to translation into better healthcare – and provide opportunities for researchers at different stages of their careers.
Informed Consent For Research
To provide informed consent a consumer needs to know what options are available, what the expected outcomes are for each option, and what the success rates and incidence of side-effects are for each option.
Informed consent requires communication between researchers and the participants of research. Communication involves both the provision of information and a capacity for dialogue between researcher and participant. Informed consent requires the communication of information material to a person’s willingness to participate such as:
- the aims and purposes of the study
- the anticipated outcomes of the research
- details of what the participant will be required to do
- possible benefits and harms to the participant
- possible benefits and harms of the study
- the right of participants to refuse to participate and to withdraw from the research at any time without being penalised
- the degree of anonymity and confidentiality which may be afforded to participants
- the anticipated use of the data
- details of data collection e.g. use of video- or audiotaping, DNA swabs etc
- issues relating to data storage and security
- the identity of funding bodies and sponsors.
Further information and resources about consent from the Consumers Health Forum of Australia.
The NHMRC/Consumers Health Forum of Australia (CHF) joint Statement on Consumer and Community Involvement in Health and Medical Research (the Statement) has been developed with the aim of supporting consumer and community involvement across all types and levels of health and medical research. The vision of the Statement is:
Consumers, community members, researchers and research organisations working in partnerships, to improve the health and well-being of all Australians through health and medical research.
Research informs health care decisions and research institutions, researchers, consumers and community members should work collaboratively to support, facilitate and value the contribution that consumers and community members make to research, and its development, conduct and communication.
As beneficiaries of advances in health care, consumers and community members have an interest in promoting the translation of research into improved policy and practice. It follows that health and medical research should develop processes and systems to incorporate and support sustainable consumer and community involvement.