Participating in 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 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 involved 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 participating 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:
If you have any questions about HIV treatment, please call QPP’s Health Promotion and Treatments Officer toll free from a land-line on 1800 636 241, use the contact form provided or call (07) 3013 5555 (nationally).
Below is an exciting opportunity for PLHIV to participate in research that aims to better understand people’s experiences of living with HIV, ageing and social isolation in diverse communities in regional, rural and outer urban Queensland. You can contact Lisa on (07) 3366 5541 or by emailing her at firstname.lastname@example.org.
Researchers from the University of Queensland and University of New South Wales, in partnership with Queensland Positive People, Positive Directions, Queensland Association for Healthy Communities and Queensland Health are undertaking an exciting Queensland specific qualitative longitudinal research project to better understand people’s experiences of living with HIV, aging and social isolation in diverse communities in Regional and Rural Queensland. We are looking for participants over 35 living in rural and remote areas of Queensland.
If you are interested in being part of the study, or have some questions, please contact us.
Dr Lisa Fitzgerald – School of Population Health – The University of Queensland
P 07 3365 5541/07 3346 5244 E email@example.com P 288 Herston Rd Herston 4006
2. What is the Opposites Attract Study?
Opposites Attract is a globally unique study exploring a range of important issues relating to HIV transmission and viral load in gay male serodiscordant (pos/neg) relationships.
Previous research in heterosexual couples has shown that when the HIV-positive partner is on anti-HIV treatments and has undetectable viral load, the risk of transmitting HIV to their HIV-negative partner is reduced by 96%.
But now the next question is to what extent this important finding applies to gay men.
If you are in a pos/neg sexual relationship, you can help. You can complete this quick online form to express your interest in joining the study, and the study team will get back to you. www.oppositesattract.net.au
3. experiences of HIV – THE SEROCONVERSION STUDY
The Seroconversion Study is a study of people in Australia recently diagnosed with HIV. This research has been running since 1992 and continues to make a real difference to the lives of people affected by HIV.
The ways HIV can affect our lives has changed over time, and it is crucial to gather current, relevant information about those experiences.
You can do the anonymous, confidential online 30 minute survey at www.hivss.net
The information collected in this survey is playing a major role in health promotion for those affected by HIV, will assist in prevention efforts by local communities, and will aid in addressing the needs of those dealing with a recent HIV diagnosis.
You can also tell your story in person with a trained interviewer (this is optional, and not required for participation in the online survey). This interview is also confidential, and allows you a chance to share your story in your own words.
For more information: Email firstname.lastname@example.org or Phone 02 9385 9954
Complete the survey at www.hivss.net or click on the button above.