Q: Will I be better off in a study?
A: There are many advantages of being involved in research or a clinical trial. Depending on the study, these may include:
- accessing programs, medicines or other treatments that are not available outside of the study and may be better than the current standard care for the disease
- accessing expensive drugs that are not currently covered by the Pharmaceutical Benefits Scheme
- seeing your treatment team, including specialists, more often
- being motivated to take an active part in your health care
- learning new ways to improve your lifestyle
- improving your quality of life
- feeling that you’ve tried all treatment possibilities
- knowing you’ve made a valuable contribution to helping others in the future.
Joining a study doesn’t always mean you will be better off than before or compared to other people in a similar situation. This is because although researchers may predict that the outcomes of their study will be positive, not everyone will respond in the way that they hope. In a clinical trial, you may be in the control arm and not given the experimental treatment. If this is the case, you will receive the best standard care available and be monitored more frequently and closely than usual. Either way, your doctor and the clinical trials or research nurse will discuss the possible advantages for you before you join a study.
Q: Is participation free?
A: The costs will be paid for by the organisation that is funding or conducting the research. This will include treatment, tests and patient check-ups. Travel or out-of-pocket costs may be refunded. Ask your doctor if this is available. People who are not an Australian permanent resident or citizen will have to cover costs.
Q: How long will a study last?
A: From start to finish, a study often takes years or even decades. However, you may only need to be involved for some of this time. It may be a one-off couple of hours, or you may need to give a bit of time every few weeks, months or years. Some studies require people to be surveyed at regular intervals for several months or years. This allows researchers to understand the long-term effects of treatments, monitor the general health of study participants and collect data about long-term survival. Studies have what is known as a recruitment phase. This usually occurs over a few months or years until the required number of people have agreed to take part.
Q: Can I be involved in more than one study?
A: You may be interested in joining multiple studies. Check with the contact officers of each study whether you can participate in more than one study at the same time. If you can, think about whether you’ll be able to commit to all their requirements.
Q: Will I be paid?
A: People participating in cancer research and trials don’t usually receive payment, apart from reimbursement of out-of-pocket costs if this applies to the study.
Q: Can I have other treatment if I go on a clinical trial?
A: Check whether the study will have an impact on other treatment you’re having or planning to have. This includes medicines for symptoms or side effects of cancer or other conditions, or complementary therapies such as herbal or nutritional supplements or massage. Ask your doctor if you need to stop or delay these other treatments, or whether they need to be modified (for example, changing the dose).