Bowel cancer, also known as colorectal cancer, can affect any part of the colon or rectum; it may also be referred to as colon cancer or rectal cancer, depending on where the cancer is located.
Bowel cancer screening is for people who do not already have bowel cancer, symptoms of bowel cancer, or any reason to have a high risk of bowel cancer.
Patient-centred care is healthcare that is respectful of, and responsive to, the preferences, needs and values of patients and consumers.
Bowel Cancer Australia provides essential support services uniquely designed for bowel cancer patients via our confidential Helpline with specialist telehealth support, as well as a national Peer-to-Peer Support Network and Buddy Program.
Bowel Cancer Australia funds research that has the potential to improve survival and/or help build a path toward a cure and integrates published research into our awareness, advocacy, and support strategies.
Bowel Cancer Australia relies upon donations and the support of hard working and enthusiastic fundraisers across the country to continue our life saving work. We raise funds to continue our life-saving work and inspire others to do the same, so everyone affected by bowel cancer can live their best life.
Studies show that patients are reluctant to discuss concerns related to their cancer and treatment because they fear they will be considered trivial by their healthcare team.
My Bowel Cancer, My Voice can help by making it easy to flag concerns with your healthcare team, helping to prompt conversations that otherwise might not take place, so you receive the right care at the right time.
My Bowel Cancer, My Voice is a free, online tool that helps you to be an active participant in decision-making about your bowel cancer treatment and care.
It uses the patient-centred and scientifically validated ICHOM Set of Patient-Centred Outcome Measures for Colorectal Cancer, co-funded by Bowel Cancer Australia, to highlight what matters most to you.iii
By completing simple online questionnaires, you can help your healthcare team detect problems early, address side effects quickly and develop a care plan that supports your specific needs, so you can enjoy the best health possible.
The questionnaires cover issues you may never have had to think about before – like how treatment or side-effects might interfere with work, family, or other social activities.
Your answers to these questionnaires are known as ‘patient-reported outcomes‘, or PROS, and help your healthcare team to better understand the impact cancer and treatment is having on your health and wellbeing – from your perspective.
A growing body of research has found that patients who track and report their PROs using tools like My Bowel Cancer, My Voice, experience a higher quality of life, have better health outcomes, and may live months longer than patients who do not track and report their PROs as closely.
After completing each questionnaire, an Outcome Summary Report will be created which you can use as a tool with your healthcare team to guide conversation and treatment decisions based on what matters most to you.
You can also use the reports over time to track your progress and monitor any changes.
In addition, our Bowel Care Nurses and Nutritionists will be with you every step of the way, providing an additional layer of assistance and support, especially during times between your appointments.
There is no known harm or risk of physical injury associated with participation.
My Bowel Cancer, My Voice includes questions that relate to your physical and mental health and your bowel cancer treatment.
These questions can be sensitive and answering them may make you feel uncomfortable or anxious.
Bowel Care Nurses are available for support by calling our Helpline during business hours.
Anyone aged 18 and over who has been diagnosed with bowel cancer or metastatic bowel cancer is eligible to participate.
If a patient is unable to enter their information independently and would like a carer or loved one to complete the questionnaires on their behalf, the patient can authorise someone to act as their proxy when filling out the consent form.
Patients can also invite members of their healthcare team to participate, so that they can view their online responses and enter clinical information related to the patient and their treatment.
(Please note, healthcare professionals will be required to register and create their own account.)
Bowel Cancer Australia’s online patient-report outcomes resource to help you to be an active participant in decision-making about your bowel cancer treatment and care
You will need an email address and access to a desktop computer, laptop computer, or a mobile device such as a mobile phone or iPad to access your account and complete your questionnaires.
Ideally, you will also have access to a computer printer enabling you to print your Outcomes Summary Report, to use as a guide in consultation with your healthcare team when making treatment decisions; alternatively, you can save your report as an Adobe PDF for viewing, printing or emailing your healthcare team.
My Bowel Cancer, My Voice uses a secure cloud-based application called healthieTM to manage PREMs and PROMs questionnaires.
healthieTM is powered by Pulse Infoframe, a data analytics company dedicated to transforming patient data into knowledge that powers decisions, improves outcomes, and enables real world evidence to help advance patient care.
All information submitted to healthieTM is automatically encrypted, stored securely and fully complies with the Australian Privacy Act 1988 (Cth); the Canadian Personal Health Information Protection Act 2004 (PHIPA); the United States Health Insurance Portability and Accountability Act 1996 (HIPPA); and European General Data Protection Regulation (GDPR) (regulation (EU) 2016/679).
healthieTM does not interfere with the settings, preferences or commands of your computer or device, nor does it change or interfere with data stored on your device. It does not connect to or send messages to other computer systems without your authorisation or install programs that may be activated by a third party without your knowledge.
If you have additional questions or would like to know more, send us an email or contact our Helpline during business hours.
1800 727 336
Monday to Friday, during business hours
Other languages – call the Translating and Interpreting Service on 13 14 50 then ask for 1800 727 336 Hearing or speech assistance – contact us through the National Relay Service then ask for 1800 727 336