- 22 min read
Consumers and prostate cancer research
Your voice and experience are important! As a consumer, you have a valuable part to play in helping to improve how prostate cancer is prevented, detected, diagnosed, treated and managed in the longer term.
Who is a consumer?
In your toolkit, we define a consumer as:
- a person diagnosed with prostate cancer
- a partner or family member of someone diagnosed with prostate cancer
- a person at risk of getting prostate cancer
- a member of the public who is interested in prostate cancer.
What is consumer research?
Consumer research studies are an important way for researchers to learn about the challenges men with prostate cancer and their families face and how their quality of life and survival can be improved. By taking part in this research, you can help make a difference.
What does it mean to be involved in consumer research?
What is involved in consumer research will differ according to the study. If you are eligible, you will be given information about the research project including its purpose, what you will be required to do, how long it will take, how your information will be kept private and who you can talk to about the study. You will also be given information on possible benefits and risks, and you will be required to give your consent. Make sure you understand what is required of you before you decide to take part in the study.
How do I join a research study?
Taking part in consumer research is often an interesting and rewarding experience. Researchers could not do these studies without the help of people like you. This part of your toolkit provides a current list of research projects that are looking for consumer involvement and how to find more information for each.
Check this page regularly for a list of consumer research projects that you may be eligible to join.
PCFA Endorsed Studies
ProHealth: A Personalised Healthy Eating and Exercise Program for Men with Prostate Cancer
In partnership with the Prostate Cancer Foundation of Australia, ProHealth has been co-designed with men who have prostate cancer and experienced healthcare professionals to offer personalized, evidence-based nutrition and exercise support tailored specifically for men undergoing androgen deprivation therapy (ADT). This comprehensive program is focused on improving your overall well-being while managing the side effects of ADT.
What’s Involved:
ProHealth is a 12-week, fully online program that provides personalized nutrition and exercise guidance through video consultations, alongside access to over 60 evidence-based educational materials. Participants will be randomly assigned to either the intervention group (receiving personalized support) or the usual care group. All equipment (including body composition scales) to participate in this study with posted to you return-paid.
Eligibility:
You may qualify if you:
- Have been diagnosed with prostate cancer
- Are currently undergoing androgen deprivation therapy (ADT) for more than 3 months
- Are not under the care of a nutrition or exercise professional
- Have access to a computer or smart device with internet
Benefits:
By participating in ProHealth, you’ll receive personalised support from a dietitian and exercise physiologist. At the end of the program, you’ll receive a comprehensive health and well-being assessment, along with long-term health strategies to continue with.
This study has received ethics approval from Deakin University’s Human Research Ethics Committee (DUHREC 2024-038).
For more details or to join the program, visit the ProHealth or contact Dr. Brenton Baguley.
Consumer Research Studies
Unless otherwise stated, the below are not PCFA studies, we do not fund them and are not involved in them. Please contact the researchers directly about these studies.
Note: all studies listed on this page must have current Human Research Ethics Approval.
WEHI Consumer Program
Researchers at the Walter and Eliza Hall Institute of Medical Research (WEHI) are seeking people with lived experience of prostate cancer to help shape and inform important cancer research. This is a meaningful opportunity to contribute to work focused on improving outcomes for people affected by prostate cancer.
You are invited to take part in this study if:
- You are aged 18 years or over
- A person living with prostate cancer, a carer of someone affected, or a community member with a genuine interest in improving prostate cancer outcomes
- Able to commit to approximately four Zoom meetings per year
- Currently living in Australia (participants do not need to be based in Victoria.)
If you agree to participate:
- Join a small group of consumers contributing insights to hormone-driven cancer research, with a focus on prostate and breast cancer
- Gain access to a very active consumer information program, including regular presentations on recent breakthroughs and developments in cancer research
If you would like to take part or would like more information:
If you would like to take part or would like more information: contact the Consumer Coordinator, WEHI Consumer Program via email, or visit the WEHI website.
Understanding and Addressing Prostate Cancer Disparities in Rural and Remote Communities: A Multi-faceted Approach.
Do you want to help improve support for men diagnosed with prostate cancer?
Researchers from the Royal Flying Doctor Service of Australia, Cancer Council Queensland, and the University of Queensland are undertaking a research study to understand and improve prostate cancer outcomes in rural and remote areas of Australia. The study explores the reasons behind poorer prostate cancer outcomes in these communities and develops strategies to address these differences.
You are invited to take part in this study if:
You, a family member, or a friend have been diagnosed with prostate cancer or if you are eligible for prostate cancer testing.
If you agree to participate:
- You will be asked to complete a short survey (around 15 minutes to complete).
- If you have been diagnosed with prostate cancer or supported a family member or friend with prostate cancer, at the end of the survey you will be invited to indicate if you would like to take part in a phone interview (approx. 30-45 minutes) to share more about your experiences.
Your participation in the survey is entirely voluntary and you can withdraw from the study at any time before submission of the survey. Information you provide will be kept strictly confidential.
If you would like to take part or would like more information:
Please access the participant information sheet with this link Participant Information Sheet and the survey with this link Survey Link.
This research is approved by University of the Queensland Human Research Ethics Committee (ethics approval number: 2025/HE000049)
Enhancing the understanding of financial toxicity in Australia: Development and validation of the FINancial Toxicity Assessment in Cancer Tool (F-INTACT) for Financial Toxicity in People with Cancer in Australia.
Researchers from Flinders University and Princess Alexandra Hospital and Metro South Hospital and Health Service are undertaking a research study to examine how cancer and its treatment affect the financial well-being of people living with cancer in Australia.
Many people experience changes in income, increased out-of-pocket costs, or difficulties working during or after treatment, which can impact quality of life and access to care. Your responses will help us understand these financial challenges, how people manage them, and what support may be needed.
You are invited to take part in this study if:
You are aged 18 years or older and have been diagnosed with cancer and are currently receiving, have previously received, or are preparing for cancer treatment.
This includes any stage of the cancer experience – diagnosis, active treatment, follow‑up care, recovery, and survivorship.
If you agree to participate:
You will be asked to complete a 15-20 minute online survey about your experiences with cancer-related money problems.
Your participation in the survey is entirely voluntary and you can withdraw from the study at any time without affecting the care you receive.
All information you provide is confidential, securely stored, and anonymised. Risks are minimal, though some questions may feel uncomfortable. There is no direct benefit to you, but your input will help improve future cancer care and financial support.
If you would like to take part or would like more information:
Please access the survey with this link Survey Link or contact the Principle Investigator using this email link F-INTACT study query.
This research is approved by University of the Metro South Human Research Ethics Committee (HREC) (HREC reference number [HREC/2024/QMS/108846]).
Understanding men’s information needs for making treatment decisions about localised prostate cancer
Researchers at the University of Melbourne Collaborative Centre for Genomic Cancer Medicine and the Australian Prostate Centre are conducting a project to develop education and decision making resources for men diagnosed with localised prostate cancer (ie: cancer contained entirely within the prostate). They are particularly interested in men’s views on genetic/ genomic testing in treatment decisions. It is likely that genomic testing will be increasingly widely used in prostate cancer care in coming years.
They would like to conduct in-depth interviews with a number of men. The interviews will be between 30 minutes and one hour duration and can be conducted on zoom from anywhere in Australia.
You are invited to take part in this study if you:
- were recently diagnosed with a localised prostate cancer and have not yet chosen a treatment
- have chosen and received a treatment for localised prostate cancer within the past two years (i.e. Active Surveillance, Radical Prostatectomy, Radiation Treatment or Focal Therapy)
- have been on Active Surveillance for more than two years
If you agree to participate, you will be asked questions on the following topics:
- your knowledge of the treatment options available to men with localised prostate cancer
- your understanding of the tests your doctors used to diagnose your cancer and find out which treatments would be suitable for you
- other information needed to make good treatment decisions
- your understanding of genetics/ genomics and prostate cancer
- some exploratory scenarios about when you would choose Active Surveillance
Your participation in the study is entirely voluntary, and you can withdraw from the study at any time.
If you would like to take part or would like more information:
Please click the link below for more information or to register your interest:
Interviews with people who have been diagnosed with localised prostate cancer.
This research is approved by The University of Melbourne
(Ethics approval number 32478).
Randomised e-Hypnotherapy for Chronic Pelvic Pain Study (REST) Consumer Focus Group
Researchers at Deakin University, Burwood, Victoria are recruiting 2-3 men with prostate cancer to be part of a consumer focus group aiming to discuss the Randomised e-Hypnotherapy for Chronic Pelvic Pain Study (REST). REST is a clinical trial testing an online hypnotherapy intervention that aims to improve pain and other biopsychosocial outcomes for people living with chronic pelvic pain.
By working with a focus group of men with lived experience of pelvic pain, they hope to develop improved strategies to recruit men into the REST clinical study.
You are invited to take part in this study if:
- You have been living with prostate cancer, and self-reported/persistent pelvic pain for at least 3 months.
If you agree to participate, you will be asked to:
- You will be invited to 1-3 focus groups lasting about 3-5 hours each.
Your participation in the study is entirely voluntary, and you can withdraw from the study at any time.
If you would like to take part or would like more information:
Please access the study using this link: Randomized E-hypnotherapy for Chronic Pelvic Pain Syndrome Trial (REST) | SEED Lifespan.
For more information about the study, please use this link: Deakin after dark: Addressing chronic pelvic pain, one audio track at a time
You can also email the study coordinator using this link: REST study.
This research is approved by the Deakin University Human Research Ethics Committee (DUHREC) – Approval number: 2024-080).
Bone Health in Cancer Survivorship
Researchers at Deakin University, Monash Health and the Cancer Council Queensland are conducting a research study to:
- Understand current healthcare strategies related to bone health management and
- Identify potential challenges in achieving the best bone health management for individuals diagnosed with cancer.
You are invited to take part in this study if you are:
- Currently receiving or have received cancer treatment
- Aged 18+
- Able to complete a 25-minute online survey.
If you agree to participate, you will be asked to:
You will be asked to complete a 25-minute online survey to:
- Respond to questions about your experience with bone health, lifestyle, and healthcare.
- Share insights into your knowledge and support received related to bone health management.
Your responses on the survey will:
- Contribute to important research that could enhance healthcare for future cancer patient
- Help identify gaps in support for bone health management.
Your participation in the survey is entirely voluntary and you can withdraw from the study at any time before submission. Once you have submitted the survey, your responses cannot be withdrawn as individual responses are grouped and therefore, not identifiable by our research team.
If you would like to take part or would like more information:
Please access the survey with this link Survey Link or email the research coordinator using this link email.
This research is approved by the Monash Health Human Research Ethics Committee (Reference number RES-24-0000-940B).
Targeting mechanisms underlying loneliness in chronic conditions
People living with chronic diseases can experience significant challenges in their day-to-day lives. Therefore, it is unsurprising that chronic diseases are associated with an increased risk of depression and higher rates of loneliness and social isolation.
Researchers from Macquarie University, Sydney, are conducting research studies to understand the relationship between social isolation, loneliness, and chronic illness in older adults. The end goal of this research stream is to develop an intervention for adults living with chronic disease that targets social isolation and loneliness.
They are currently conducting a confidential online survey to identify possible factors that may impact chronic disease outcomes, social isolation and loneliness.
They would love to hear from you if you:
- Are 60 years and over;
- Have been diagnosed with at least one of the nine common physical chronic diseases
- (i.e., arthritis, asthma, diabetes, back pain, cancer, chronic kidney disease, chronic obstructive pulmonary disease, osteoporosis, cardiovascular disease);
- Are able to read and write English (to the level of the daily newspaper);
- Reside in Australia; and
- Do not have a cognitive impairment (e.g., due to dementia or brain injury) or significant psychiatric comorbidity (e.g. psychosis, delirium).
You do not have to be experiencing loneliness or social isolation to participate.
If you agree to participate:
If you are interested in participating in this study, you will complete an eligibility screener via online survey, to determine if the study is suitable for you. This screener will take approximately 5 minutes to complete. If you are eligible, you will progress to the main survey, which will take approximately 30-45 minutes to complete. You may be invited to complete this online survey study each year for approximately four years.
If you would like to take part or would like more information:
Please use this link Participant Information and Consent Form to read more about the study. If you consent to participating, you will then be directed to an eligibility screener, and then the main survey if the study is suitable for you.
This research has been reviewed and approved by the Macquarie University Human Research Ethics Committee (#520241818360000).
MOSES Survivorship Study
Researchers from Flinders University are conducting a research study to find out whether a new model of survivorship care called MOSES-Survivorship will benefit your quality of life and healthcare experiences when compared with the Usual Care provided by specialists and hospitals.
In the MOSES-Survivorship model of care, you may be offered a telehealth appointment with a Specialist Prostate Cancer Nurse who will listen to your concerns and develop a plan with you to manage your symptoms and other issues. They will then provide recommendations to your general practitioner (GP) so that your care responsibilities can be shared between your cancer specialists (urologist, radiation oncologist or medical oncologist) and your GP.
The MOSES-Survivorship research team would love to hear from you if you:
- Have a diagnosis of prostate cancer
- Have a regular GP or GP practice that you can identify
If you agree to participate you will:
- Be provided with detailed information about the study by a study researcher, and you will be asked to sign a Consent Form.
- Be placed into one of the study groups: MOSES-Survivorship OR Usual Care
- Be required to complete several surveys at three different time points over 12 months.
Your participation in this research is voluntary, and you can withdraw from the study at any time.
If you would like to take part or would like more information:
For more information about this study or to register your interest in participating, please click this link.
This research has been reviewed and approved by the Metro South Human Research Ethics Committee.
How should we manage multiple health conditions in people affected by cancer?
Are you living with or beyond cancer? Or are you a caregiver for someone living with or beyond cancer?
Are you, or the person you care for, also living with one or more other chronic health conditions?
Researchers at Flinders University are looking for adults (age 18+ years) who are living with or beyond cancer and also living with one or more other chronic conditions, to share with us their experiences with the current healthcare system, and how this could be improved. We are also interested in the experiences of caregivers in this context.
They would love to hear from you if you:
- Have ever been diagnosed with cancer, including prostate cancer, or
- Have ever been a caregiver for a person with cancer, including prostate cancer; and
- You, or the person you care for, also living with one or more other chronic health conditions, and
- You are aged 18 years or older.
If you agree to participate:
You will be asked to attend either a focus group or interview to help us identify current barriers, enablers and other considerations, and to contribute your perspectives on developing a new model of care to manage multiple health conditions in the context of cancer care. You can participate in person (Adelaide location) or remotely.
Your participation is voluntary, and all data will remain confidential.
If you would like to take part or would like more information:
Please register your interest online via the following link:
https://qualtrics.flinders.edu.au/jfe/form/SV_1UkLus98lS7axCu
Lead Investigator, Dr Emma Kemp at [email protected] /08 7421 9954
This research is approved by the Flinders University Human Research Ethics Committee (Project ID number 7268).
The prevention of Catheter-Associated urinary tract InfectiON (CATION) study
Researchers at Avondale University are investigating ways to prevent urinary tract infections (UTIs) in people who undertake intermittent catheterization. The use of a catheter can cause complications including UTIs. For people who are already managing a chronic disease or disability, UTIs are an unwanted and preventable burden. This study aims to help.
They would love to hear from you if you:
- Are 18 years or older,
- Undertake intermittent catheterization, and
- Are likely to be undertaking self-catheterization for >12 months.
You are not eligible for this study if you:
- Are currently in hospital or receiving palliative care
- Cannot provide informed consent, or
- Have a known allergy to chlorhexidine
If you agree to participate:
The research team will provide wipes to use before inserting a urinary catheter. These wipes will contain either saline, or the antiseptic chlorhexidine. The study will last for 12 months, and we will ask you to answer a monthly survey (<5 mins). If you get a UTI during the study, we will ask for more information. At the end of the study, we will assess if the chlorhexidine wipe reduced the incidence of UTI. The findings from this study will help to support the greater community. Your participation is voluntary, and all data will remain confidential.
If you would like to take part or would like more information, please click the link below:
https://utipreventionstudy.com/
The research team also posts regular updates on their Facebook page https://www.facebook.com/people/UTI-Prevention-Study/61562132467438/
This research has been reviewed by the Hunter New England Human Research Ethics Committee.
The ASTuTE clinical trial for intermediate risk prostate cancer patients
Shared decision making using multimodal Artificial Intelligence (MMAI) with digital histopathology for Androgen Deprivation Therapy (ADT) use in men with intermediate risk prostate cancer managed with standard of care radiotherapy.
Researchers from GenesisCare are conducting a study investigating how a new prostate cancer test affects doctors’ treatment recommendations, and what the outcomes for patients are 5 years after having the test.
This laboratory test utilises artificial intelligence (AI) to assess digital pathology (tumour) images combined with prostate cancer history information from an individual patient.
The results of the test provide a likelihood of future risk of prostate cancer recurrence and whether a patient is more or less likely to benefit from ST-ADT (short term androgen deprivation therapy) treatment in addition to radiotherapy, on average. They may be used by doctors together with other information about a patient to make an informed treatment recommendation.
The AI test being used in the trial has not yet been approved by the Therapeutic Goods Administration (TGA) in Australia for patients with prostate cancer and is therefore considered experimental in this research.
They would love to hear from you if you:
have been diagnosed with intermediate risk prostate cancer and are planning to have radiotherapy.
If you agree to participate in this study:
A previously collected tumour sample of your prostate cancer will be requested for the trial. Before the test is completed, information regarding your prostate cancer and your doctor’s treatment recommendations will be collected.
Your participation in this research study is entirely voluntary. You are not obliged to take part.
If you would like to take part or would like more information, please click the link below:
The AsTuTe clinical trial patient information
This research has been reviewed and approved by the St. Vincents Hospital Sydney Human Research Ethics Committee.