For Consumers

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Consumers

Evidence shows that where consumers are involved in the design of research and data collection tools—such as surveys or questionnaires—the tools are better received by the participants. There is also evidence that involving consumers is helpful in improving the dissemination of research findings to the community.

For example, involving consumers in setting research agendas or identifying research priorities places consumer needs at the centre of cancer research.

Involving consumers in research:

  • ensures that issues important to consumers are identified and prioritised
  • supports the dissemination of research results
  • helps to translate research findings into clinical practice and implemented within health service delivery
  • protects against money and resources being wasted on research that has little or no benefit or impact for consumers.

Australian Clinical Trials

The Australian Clinical Trials and Consumer Health Forum of Australia has developed this fact sheet Consumer Guide to Clinical Trials for consumers.

Australian Charter of Healthcare Rights

Informed consent

Everyone taking part in a clinical trial must give ‘informed consent’ or have a parent or guardian or other legally authorised person give consent using a Participant Information and Consent Form (PICF).

Informed consent means that potential participants are given information about the key facts of a clinical trial before deciding whether to take part (or not). Informed consent also means that participants are provided with information on new developments throughout the trial.

You cannot be entered a trial if you don't want to be. If you are asked to take part, you are free to say yes or no at any time. There should be no pressure on you to enter a trial. If you are under 18, a parent or guardian must give legal consent and you have to give your permission as well.

If you have concern about a clinical trial

**If there is a serious or imminent risk to human health or life, it is recommended that you contact emergency services 000 urgently**

If you feel that the trial you are participating in or a member of your family is participating and is not proceeding as expected e.g. the care or treatment was not as anticipated, or if you have another concern, you should raise your concerns with the investigator/researcher or clinical trial nurse directly. Contact details including a contact number should be included on the Participant Information and Consent Form (PICF) which you signed to enrolled in the trial.

Research Governance Office

Alternatively, you or a family member may contact the Research Governance Office directly via email: research.governance@health.tas.gov.

Tasmanian Health Service Consumer Feedback

The Tasmanian Health Service has a Consumer Feedback service at each main health service site. You may contact the hospital service directly or complete the Department of Health's online feedback form.

Tasmanian Health Complaints Commissioner

The Tasmanian Health Complaints Commissioner is an independent officer appointed by the Governor and acts independently, impartially and in the public interest. Contact details for the Health Complaints Commission Tasmania is: https://www.healthcomplaints.tas.gov.au/