My Bowel Cancer My Voice

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.

 

Patients describe navigating a bowel cancer diagnosis as being a bit like a roller coaster ride, where they strap themselves in and hang on for the ride until they emerge, wobbly and shaken at the other end.

Medically, you may recover in a few months; but adapting physically, emotionally, and psychologically to new day-to-day adjustments can take much longer.
 
“Bowel cancer affects people long after the recovery period. Physical and emotional health problems, such as bowel functioning, dietary considerations and anxiety, can remain for the rest of your life,” said Donna Bauer, now living beyond bowel cancer.

Yet research shows that patients are reluctant to raise these matters with their specialist and multidisciplinary team because they don’t want to take up valuable time discussing things, they fear will be considered trivial.i
PROMs Statements

| My Bowel Cancer, My Voice can help
 
Be an active participant in your treatment and care.

Do you want to be actively involved in decision-making about your bowel cancer treatment, care, and recovery?

Using the patient-centred and scientifically validated ICHOM Colorectal Cancer Standard Setii, co-funded by Bowel Cancer Australia, My Bowel Cancer, My Voice prompts conversations with your specialist/healthcare team which otherwise might not take place by highlighting concerns that matter to youiii.

The questionnaires cover issues you may never have had to think about before, from practical matters like treatment or side-effects interfering with work, family, or social activities, to how you are feeling physically and emotionally. The answers you provide are known as ‘patient-reported outcomes’, or PROs, and provide a picture for your healthcare team of the impact cancer and treatment is having on you.

By prioritising the things you consider to be most important, My Bowel Cancer, My Voice can help your medical team deliver treatment and care that is more personalised, responsive, and effective - giving real meaning to the term 'patient-centred care'.

My Bowel Cancer My Voice

| 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 your bowel cancer treatment and care.

It is available to anyone aged 18 and over who has been diagnosed with bowel cancer or metastatic bowel cancer and has not yet started treatment.

Participating specialists help Bowel Cancer Australia cover running costs of the tool through a subscription fee. 

| 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 Patient Information and Consent Form.
  • Invite your specialist to participate, so they can view your feedback in real time.
  • Complete the online questionnaires at three different points in the first year of your treatment and care, and then once annually for up to 10 years.
  • Discuss your results with your specialist and multidisciplinary team, to guide decision-making about your treatment and care so that it addresses what matters most to you.

| Why should I participate?

To help improve your health outcomes.

Over the course of your participation, your answers to the online questionnaires (known as patient-reported outcomes or PROs) can:
  • Help your specialist and multidisciplinary team to better understand what’s most important to you regarding your treatment and care goals
  • Identify issues early and ensure you receive the right care at the right time
  • Guide you when talking to your specialist and multidisciplinary team about creating a treatment plan that’s tailored just for you, so you can continue to enjoy the best health possible
  • Track your progress over time because it’s easy to forget how far you’ve come
In addition to your specialist and multidisciplinary team, our Bowel Care Nurses and Nutritionist will be with you every step of the way, providing an additional layer of support and assistance, especially during times between your appointments.
 
What if I have more questions?
 
If you have questions or would like to know more, contact our Helpline on 1800 555 494 during business hours, or send us an email

 

My Bowel Cancer My Voice

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 The Colorectal Cancer Set covers all bowel cancer patients with newly pathologically diagnosed invasive colorectal cancer (stage I-IV) being treated in the public and private health system.
iii 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.

Related Information - Patient-reported outcomes

My Bowel Cancer, My Voice - Patient

My Bowel Cancer, My Voice

Patient-reported measures explained

Patient-reported measures

My Bowel Cancer, My Voice - Specialist

My Bowel Cancer, My Voice - Specialist