Your healthcare team consists of experts in bowel cancer, but you are the expert in what matters most regarding your life, your treatment, and your care.
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.i
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.ii
| What is My Bowel Cancer, My Voice?
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.
Why should I participate?
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.
What are the possible benefits of participation?
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.iii
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 Nutritionist will be with you every step of the way, providing an additional layer of assistance and support, especially during times between your appointments.
What are the possible risks?
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 the Helpline on 1800 555 494 during business hours.
Who can participate?
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.)
Become an active participant in your treatment and care.
| What’s involved?
- You can sign up anytime, by clicking here.
- Follow our step-by-step guide
- Check your email inbox for an invitation to create your account and get started.
- Read and sign the Privacy Notification and Consent Form.
- Invite your healthcare team to participate, so they can view your feedback in real time.
- Complete the online questionnaires at different intervals in the first year of your treatment and care, and then once annually for up to 10 years.
- You will be able to view the information you have entered to help you track any changes you experience over time.
- You can download and print your Outcomes Summary Reports and use them with your healthcare team, to guide decision-making about your treatment and care so that it addresses what matters most to you.
What are the technical requirements for me to participate?
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.
How secure is my information?
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.
What if I have more questions?
If you have additional questions or would like to know more, send us an email or contact our Helpline on 1800 555 494 during business hours.
i P.A. Sutton et al. Evaluating unmet needs in patients undergoing surgery for colorectal cancer: a patient reported outcome measures study. Colorectal Disease 2019. The Association of Coloproctology of Great Britain and Ireland. 21, 797-804.
ii Radiation oncologists reported that PROs have enabled honest conversations related to sexual dysfunction, incontinence, and rectal bleeding in patients with prostate cancer. Before the implementation of PROs, these symptoms weren’t always explicitly discussed, or their importance was downplayed.
iii. Basch E, Deal AM, Kris MG, et al. Symptom monitoring with patient-reported out-comes during routine cancer treatment: a randomized controlled trial. J Clin Oncol 2016; 34: 557-65.