Participating in Trials
Participating in HIV Social Research & Clinical Trials
Participating in clinical trials is one of the most important decisions you may make about your current and future health, so it is useful to discuss your interests to participate in a trial with a broad range of people, including your peers, your doctor and the trial researchers.
Trial researchers are ethically obliged to provide you with consent information about the trial you are anticipating to enter, including the perceived benefits of participating as well as the possible risks.
You do not have to make a decision whether to enter a trial in any immediate sense, in fact it is best advised to take the information you are given and think about it fully.
Trials usually have a recruitment time period for you to take your time to consider whether you will participate. However, some trials fill up quickly or they have limited places available for the study.
Also be aware that some trials – both clinical and social researcher trials – have inclusion and exclusion criteria which you are required to meet before you can participate in the trial. A simple example might be your current age, for a trial that is only seeking to study participants of a certain age range, or above or below a certain age – if you don’t fit the age requirement you cannot enter the trial.
Clinical trials (which involve medical treatments or interventions) can tend to have complex inclusion criteria, such as the level of your CD4 and other clinical markers – but again trial researchers will explain these things to you.
Your decision to participate in trials becomes especially important when it is a clinical trial (often involving a new experimental treatment or drug, as the intervention/drug has not been proven to be either effective or efficacious yet – as that is the reason for the trial). However such clinical trials, when conducted in humans, are required to have met stringent pre-trials about the safety of the treatment or intervention being proposed. Human trials are usually stage 2, or more often stage 3 trials, and have previously been assessed for safety in stage 1 and stage 2 trials.
Social research studies tend to comprise a lower risk for participating, as these studies tend to seek your narrative story and comments about your experiences with the topic being investigated under the study (for example, experiences of stigma, or experiences of being newly diagnosed with HIV).
These studies are not without risks though and your consent to participate is also sought from the researchers, who are also ethically required to advise you about the intent of the research as well as the benefits and risks of participating.
Very often these are self-evident however, say such as completing a short online survey. The difference in terms as to what comprises a small survey versus a research study versus a major trial with comparison groups, exist within a continuum of the range and types of research that is carried out.
Once you enter a study you also have the right to withdraw consent from your participation in the study – entering a study does not oblige you to complete the study.
Generally the benefit of research is that it assists the majority of people and helps to discover new science and evidence for health and treatment for the benefit of the entire population.
You may or may not get individual benefits from participating in any given trial. These considerations are up to you to weigh up your self-interests in participating, alongside benefits to your peers from participating. The decision to be in a trial is your own.
Want more information on trials being conducted in Australia? Visit the following websites for more information:
Side Effects & Changing Treatment
Modern HIV drugs tend to have minimal side-effects but some side effects can still occur. This is why all changes to your treatment should always be in consultation with your HIV doctor.
Drug Resistance & Adherence
HIV drug resistance is caused by changes in the genetic structure of HIV that affect the ability of medicines to work effectively. Ensuring you are as consistent with your regime as possible reduces this possibility.
How Much Does Treatment Cost?
Treatment for HIV is available throughout Australia at highly subsidised costs for Medicare Card holders, through the PBS.
Our trained team is here to help you should you have any questions or need support. You can call for free from a Queensland land-line on 1800 636 241 or call (07) 3013 5555 (national). You can also email us or use the contact form or the chat function in the corner of our website.
