- 15 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
PCEssentials Hormone Therapy Study
Researchers from the University of Southern Queensland and PCFA are conducting a study seeking to understand how best to improve the quality of support available for men on hormone therapy.
You may be eligible to take part if you:
- have been diagnosed with prostate cancer and have started or are planning to start hormone therapy.
What’s involved?
- All participants will receive support information about prostate cancer and hormone therapy in the mail
- Some participants will also receive additional nurse telehealth sessions
- All participants will be followed up at 3, 6 and 12 months after they join the study.
What’s next?
To find out more, contact the study team via this link PCEssentials.
Identifying the survivorship care needs of men on active surveillance for prostate cancer within 12 months of diagnosis
Researchers from the University of Southern Queensland and PCFA are conducting a study to understand your experiences of being on active surveillance for prostate cancer in an anonymous online survey.
They would love to hear from you if you:
- have been diagnosed with prostate cancer and are currently undergoing active surveillance.
- have been on active surveillance less than 12 months.
- have not had any previous treatments (other than active surveillance) for prostate cancer (including focal therapies).
- can read and write English to be able to complete the survey.
Survey questions include:
- your understanding of active surveillance
- your feelings about the information you received about active surveillance
- any extra information you needed
- any concerns you have had with active surveillance
- any distress and/or physical symptoms you may have had or are experiencing.
Your participation in this survey is entirely voluntary. Please click the link below for more information or to register your interest:
Survivorship care and active surveillance
Please note: You are not obliged to take part.
You can also volunteer to be interviewed following completion of the survey, to further discuss your experiences.
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.
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).
FOCUSau – a study evaluating an online support program for people living with advanced cancer and their family carers.
Researchers from the University of Melbourne/St. Vincent’s Hospital are recruiting people who are living with advanced cancer (cancer that has progressed or returned) and their family carers (usually a family member or friend). They will take part in a study evaluating a three-month online support program called FOCUSau that aims to improve their wellbeing and quality of life.
What’s in the FOCUSau program?
The FOCUSau program is made up of four guided sessions. The person living with advanced cancer and their family carer work through the sessions together over three months.
The sessions aim to improve emotional wellbeing and quality of life by helping with communication and coping strategies, uncertainty, planning for the future and symptom management.
They would love to hear from you if you:
- Are an adult with advanced cancer (cancer that has either progressed or returned), and
- Have a family carer (family member or friend) willing to take part in the study, and
- Have internet access via a computer or tablet.
Why your participation matters
This program could make a real difference in the lives of people dealing with cancer and their family carers. By joining this study, you can help others facing similar challenges.
If you agree to participate
You can choose to opt out at any time.
Your participation is voluntary, and all data will remain confidential.
If you would like to take part or would like more information:
Please visit the study website this link https://medicine.unimelb.edu.au/focusau.
If you would like a member of the research team to contact you, you can find contact information at the bottom of the attached information pamphlet.
This research has been reviewed by the St Vincent’s Hospital Melbourne’s Human Research Ethics Committee.
National Consumer Program to improve cancer outcomes across Rural and Remote Australia
Do you have a lived experience of cancer, or have you supported someone through their cancer journey? Do you live rurally or remotely? Are you passionate about improving the experience and care provided to people with cancer and their families?
Researchers at Deakin’s Institute for Health Transformation want to partner with you on the Equitable Cancer Outcomes for Rural and Remote Australia (ECORRA) National Consumer Program.
Consumer members will have the opportunity to be involved in various projects. This includes research study governance bodies, developing engagement strategies, reviewing research plans and protocols, participating in co-design workshops, contributing to the interpretation of research findings, and contributing to the development of policies and frameworks. This is a paid opportunity.
We would love to hear from you! More information is available in the attached flyer, and please reach out to [email protected] with any questions.
Please complete the Expression of Interest form by 20th December 2024
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.
Anxiety in oncology patients
Researchers at The University of Melbourne are interested in psychological factors that contribute to the development and maintenance of anxiety in those with a lived experience of cancer, including prostate cancer.
The survey questions will explore relationships between psychological qualities like emotions, attitudes, personality traits and beliefs, that may be linked to the development of anxiety. Some of the emotions include fears about illness or death, and some of the beliefs include weight, life, religion and meaning.
We aim to use this information to improve the support those with cancer receive following diagnosis, and to improve any psychological treatments they may go on to receive.
They would love to hear from you if you:
- Have a current or previous diagnosis of cancer, including prostate cancer, and
- Are 18 years or older.
If you agree to participate:
Participation involves filling out a short online questionnaire on your phone or computer, at three time points. The 2nd and 3rd time points are optional, and you can choose to opt out at any time.
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:
Anxiety in oncology patients study
This research has been reviewed and approved by the Melbourne University 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.
Chemotherapy and Sources of information
Researchers from the University of Sydney are conducting a study investigating how the different sources of information people encounter prior to undergoing chemotherapy can influence expectation and subsequent experience of side effects arising from chemotherapy.
During this study you will be asked about the sources of information you used to understand your treatment (e.g., doctors, family, social media) as well as what side- effects you expected and experienced as a result of chemotherapy.
They would love to hear from you if you:
- have undergone your first experience with chemotherapy for cancer in the last 12 months.
- have received chemotherapy alone or in combination with other therapies (e.g. radiation therapy)
- received your chemotherapy treatment in Australia, New Zealand, The United Kingdom or Canada
- are aged over 18 and can speak English
You are not eligible for this study if you have been treated with immunotherapy and other targeted treatments.
If you agree to participate, you will be asked to complete a 20 – 25 minute online survey.
Your participation in this survey helps us to better understand the sources of information people with cancer use and rely upon. This will enable us to focus our future research on ways to improve communication with cancer patients to reduce their burden of chemotherapy side effects.
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:
