Consumers, participants and partners

Get involved

Being involved with health and medical research offers many benefits: 

• Access to the newest, most up-to-date research treatments before they are available to the general public and standard of care.

Obtain advice and treatment from leading medical experts in cutting-edge medical facilities and be provided with more information about the condition or illness.

• Provide an opportunity for people with rare or difficult to treat conditions for which there may be limited evidence about best management or treatment options. 
• Contribute to the design of research projects that reflect the needs and priorities of the community.
• Support the improvement of health and medical care for all Tasmanians by contributing toward research that can be translated into clinical practice and health service delivery.

Participating

It is important that any potential participant has an in-depth discussion with their healthcare provider as well as the Researcher regarding the benefits and risks of the research. As with all medical procedures, clinical trials may pose some potential risks for participants, so it is essential that potential participants seek advice to ensure that they understand both the risks and benefits of participation. 

It is also important to know that participants can decide to leave a research project at any time by withdrawing their consent if they no longer wish to participate. There will be no impact on the healthcare that a participant will receive. 

Individuals interested in participating in a clinical trial should visit ANZCTR, an online registry of clinical trials being undertaken in Australia and New Zealand.

Informed consent

Consent should be a voluntary choice made by the participant and should be based on sufficient information and adequate understanding of both the proposed research and the implications of participation in it, and not perceived as a mere formality to satisfying the formal requirement. Obtaining participant consent is a meaningful act that should aim to forge a mutual understanding between researchers and participants. It is an opportunity for researchers to promote their research and for participants to ask questions and to discuss the information and their decision with others if they wish. 

Concerns about a clinical trial

If you feel the trial is not proceeding as expected (for example, you are not receiving the care or treatment as anticipated) or if you have another concern, you should raise it in one of the following ways:

Contacts 

Investigator, researcher of study coordinator

Speak to your Investigator, Researcher or Study Coordinator at your next follow up appointment. Details including a contact number should be included on the Participant Information and Consent Form (PICF) which you signed before being enrolled in the trial. If you do not have face-to-face contact with the researchers (for example, you have been asked to complete a survey online or via an app) you may wish to call them directly.

Hospital complaints or patient safety office

The Tasmanian Health Service has a Consumer Feedback service. You may contact the hospital service directly or complete our General Enquiries Form. 

Research Ethics and Governance Office (REGU)

Alternatively, you may contact the Research Governance Office directly via emails. 

All staff receiving complaints must ensure that details are lodged in the Safety Reporting and Learning System and an email is sent to [email protected] for ethics complaints, or to [email protected] for governance complaints.

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.

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

• NHRMC Consumer and Community Involvement
• Australian Charter of Healthcare Rights

Consumer Liaison Unit

Questions and concerns about a clinical trial can be directed to the health service Quality and Patient Safety Consumer Liaison Unit by collecting and completing a Feedback form (available at all health services) or by contacting the service on the details provided below:

Southern region

• Phone: 1800 811 911
• Email: [email protected]

Northern region

• Phone: 1800 008 001
• Email: [email protected]

Northwest region

• Phone: 1800 062 322
• Email: [email protected]

Oral Health Services Tasmania

• Phone: 1300 011 013
• Email: [email protected]

Mental Health and Ambulance Tasmania

• Please contact the relevant location above, in which you were treated.