| Registration

Q. How do I start sharing what matters most to me?
 
Click on the link to participate.
My Bowel Cancer My Voice - Patient

The My Bowel Cancer, My Voice registration webpage will open on your screen.
 
Click 'Get started'. 
Get started

Enter your first and last name and click ‘Next page’.

My Bowel Cancer My Voice Get started

Enter your email address and click ‘Submit’.
My Bowel Cancer My Voice Get started
 

Step 3
Check your inbox for an email from This email address is being protected from spambots. You need JavaScript enabled to view it. and follow the instructions. 
 
Click on the link provided to activate your account and create a password. 

My Bowel Cancer My Voice create your password welcome email

 
PROMs 6
 
| Logging in to your account
 
Q. How do I log into my account?
 
Once you’ve registered, you can log in to your account at any time using your username (usually your email address) and the password you created, by visiting https://healthie.pulseinfoframe.com/login

Pulse log in page

Q. What if I forget my password?
 
If you forget your password, click the 'reset password' link.
 
A prompt will appear asking you if you want to receive an email with a new password.
 
Click 'Ok'.

Reset Password Prompt

A secure, auto-generated password will be emailed to you which you can use to log in.
 
You can continue to use the new password provided or you can change it to something more meaningful to you from within your dashboard.

Q. What if I want to change my password?
 
To change or update your password, you will need to be logged in to your account.
 
Hover your pointer over your username located in the right-hand corner of your dashboard.

A pop-up menu will appear. Click 'Settings'.


User settings


Your 'User Settings' will display.
 
Enter your details and tick the 'reset password' box.
 
Enter the new password you would like to use.
 
Please remember, for security reasons your new password must have at least 8 characters including:
  • 1 lower case letter
  • 1 upper case letter
  • 1 number
  • 1 special character

Confirm the new password by entering it again in the second box provided.

When finished click 'Save'.


User settings 3

PROMs 3
 
| Patient information, privacy & consent
 
Q. How do I view and sign the Patient Information & Consent Form?
 
When you log into your account the first time, the My Bowel Cancer, My Voice Participation Information & Consent form will appear on your screen.
Consent

To open and read the form, click on the box in the left corner next to the blue arrow.
Consent sign

Please read the form carefully. It includes important information you need to know.
Consent 2

As you read through the Consent section of the form, click the circle or square button next to each item you consent to as part of your participation. Some items are mandatory (circle checkboxes), while others are optional (square checkboxes).
 
If you would like your healthcare team to participate and they have not yet subscribed, be sure to tick the box authorising a Bowel Cancer Australia Bowel Care Nurse to make contact. After you have submitted your consent form, you will be asked to complete your Patient Profile, where you can include their name and contact details (see Patient Profile below).

Consent 3

Q. How do I ‘sign’ the form?
 
Before submitting your consent form, you will need to sign it. This can be done digitally. Click ‘Sign’ and type your name to create your e-signature.
Verisign signature box

Your e-signature will automatically be entered into the form.
Signed consent form

Q. I would like to keep a copy of the form for my reference. How do I download or print it?
 
When the form is open, click on the ‘download’ or ‘print’ icon located at the top of the screen.
Consent 2
 
PROMs 8
 
| My dashboard
 
Q. How do I view my dashboard?
 
Once you have signed your Patient Information, Privacy and Consent form, you will automatically be directed to your personal dashboard.
 
To view your privacy-protected online dashboard, you must be logged into healthie. You can log back in at https://healthie.pulseinfoframe.com/login and follow the steps above.
 
Your dashboard gives you direct access to your Patient Information & Consent Form (Consents), your Patient Profile (Profile), and your PROs Questionnaires and Outcome Summary Reports (Surveys).
 
You can also access Bowel Cancer Australia support services and resources from your dashboard in just one-click.
PROMs Buttons

  • Send an email to our Bowel Care Nurse or Nutritionist about any concerns or questions you may have.
  • Access the most up-to-date Bowel Cancer Australia patient resources
  • View the latest bowel cancer stats and facts
  • Frequently Asked Questions - find answers to the most frequently asked questions

The icons located at the bottom of your dashboard indicate the status of your questionnaires.
  • The pencil icon indicates the questionnaire is open and can be completed.
  • The hourglass icon indicates the questionnaire will be available soon.
  • The calendar icon indicates a questionnaire has expired and is no longer available for completion.
  • The magnifying glass icon allows you to view a questionnaire.
  • The download icon indicates the questionnaire is available for download.

Dashboard 1

PROMs 4
 
| Patient profile
 
Q. How do I complete my Patient Profile?
 
Your Patient Profile includes general information about you, your diagnosis, and your healthcare team and should take less than 15 minutes to complete.
 
To open your Profile, click on the hyperlink.

Dashboard 1

About me
 
Enter general information about yourself, including your preferred contact details.
About me

About my diagnosis
 
Enter general information about your bowel cancer diagnosis.
Profile 1
 

About my specialist and proxy (optional)
 
If you indicated in your consent form that you would like for Bowel Cancer Australia to contact your healthcare team about participation in My Bowel Cancer, My Voice, enter their contact details in the ‘About my specialist’ section.
Profile 2

If you indicated in your consent form that you would like to invite someone to assist you in completing your questionnaires and act as your ‘proxy’, enter their contact details in the ‘About my proxy’ section.
 
You can invite more than one person to be your proxy over the duration of your involvement, but only one person can be an active proxy at any one time.

Profile 3

Please review your responses carefully before clicking ‘submit’.
If you need to change any information after you have submitted it, please click the 'Contact A Nurse' button located on the dashboard and leave details of the amends you would like made, or call our Helpline 1800 555 494 during business hours for assistance.
Profile 4

Once your information has been successfully submitted and saved to the system, the status light located in the right-hand column will change from red to green.
Dashboard 2

BCA 2020 Website Section Image 1520x280 PROMs questionnair 7
 
| Questionnaires
 
Q. Where do I go to find my questionnaires?

You will find your questionnaires in the Surveys section of your dashboard.

The status of each questionnaire is indicated by helpful icons which appear next to them.
  • The pencil icon indicates the questionnaire is open and can be completed.
  • The hourglass icon indicates an upcoming questionnaire.
  • The calendar icon indicates a questionnaire has expired and is no longer available for completion.
  • The magnifying glass icon allows you to view a questionnaire.
  • The download icon indicates the questionnaire is available for download.

Questionnaires

Completing your first questionnaire
 
Once you have signed the consent form and completed your profile you will have access to your first questionnaire.
 
The questionnaire is referred to as your ‘baseline’ because it establishes an initial point of reference (a baseline) for you and your healthcare team to refer to as you proceed through treatment and beyond.
 
To complete the questionnaire click on the pencil icon. To view a completed questionnaire click on the magnifying glass. To download a blank or completed questionnaire click on the download icon.

Questionnaire

It may be helpful to have the following information available, which you can find in your pathology report or obtain from your healthcare team.

  • The stage and location of your bowel cancer 
  • Whether or not your cancer has metastasised
  • Your tumour’s MMR/MSI/KRAS/BRAF status 

Baseline Questionnaire

Generally, the questionnaires take less than 20 minutes to finish. The progress bar allows you to view how much you have completed.
Baseline Questionnaire completed

Q. What if I’m unsure of how to respond to a question? Can I answer the questionnaires at my appointments if I cannot complete them online at home?
 
If there are questions you are unable to answer due to a lack of information, you can print out a blank version of the questionnaire and take it with you to your next appointment for assistance.

Please note, if you complete the questionnaire using paper and pen, it will still be necessary to enter your responses electronically. If you are unable to do so, you can have your proxy do it on your behalf.

Alternatively, you can call our Helpline during business hours on 1800 555 494 or click on the ‘Contact a Nurse’ button in your dashboard to send our nurses an email requesting assistance.
Q. How do I print a blank questionnaire?
 
Click the download icon to save a copy of the blank questionnaire to your device. You can then print it at your convenience.
Dashboard 3

Q. Once I complete my questionnaire, how can I view my results?

Once submitted, your responses will be saved electronically in your patient dashboard and available for you to view within your dashboard by clicking on the magnifying glass icon.

You can also download a copy of your responses including an Outcomes Summary Report, by clicking on the download icon.
Dashboard 4

We encourage you to take a digital or printed copy of your Outcomes Summary Report to your next appointment and use it as a tool to guide decision-making about your treatment and care.

The downloadable version of your results will include a cover sheet explaining the benefits of My Bowel Cancer, My Voice and all the details your healthcare team needs to sign up.

BCA 2020 Website Section Image 1520x280 PROMs questionnair 1
 
| Understanding my results
 
PROs are patient-centred and relate not just to survival; the questions address areas affecting your ability to lead a productive life, during and beyond bowel cancer treatment and care.
 
Your responses are converted into PRO scores which reflect the results you care most about when seeking treatment (e.g. functional improvement and the ability to live a normal, productive life) and create an information-base against which you and your healthcare team can monitor and assess your progress - before, during and after your bowel cancer treatment.

Results

Your scorecard appears on the cover of your Outcomes Summary Report.
 
The summary table includes the issues that were identified as the most important to bowel cancer patients during the development of the ICHOM Colorectal Cancer Standard Set.

Your scores are based on the answers you provided in your questionnaire and are calculated using scientifically validated scoring methods.
 
The questions are divided into three categories: function-related, symptom-related, and overall health/quality of life.
Function-related questions cover things like how you are feeling physically and emotionally, and whether your physical or medical treatment is interfering with your family life or social activities or causing you financial difficulties.
  • A high score on the functional scale indicates you are functioning well. This is what you want to aim for.
  • A low score on the functional scale suggests your cancer or treatment is affecting your ability to function in a way that needs to be considered.

Symptom-related questions cover issues that can often be overlooked, such as fatigue, pain, nausea/vomiting, appetite loss, sleep disturbance, sore skin around the stoma, constipation, diarrhoea, or sexual dysfunction.

  • A high score on a symptom scale/item indicates you may be experiencing symptoms or issues that are negatively affecting you and need attention. 
  • A low score on a symptom scale/item indicates you are tracking well and that the issue in question is currently not of concern for you.

The two questions relating to how you would rate your overall health and quality of life provide a good indicator of how you are feeling generally.

  • A high score for the global health status/QoL represents a high QoL (quality of life).
  • A low score for the global health status/QoL suggests cancer and treatment are affecting your quality of life in significant ways that require investigation and follow up.

We encourage you to review your scores with your healthcare team, as they can help to highlight what matters most to you during your treatment and care and can be used to track your progress over time.
 
By prioritising the concerns, you consider to be most important, PROs can help your healthcare team deliver treatment and care that is more personalised, responsive and effective - giving real meaning to the term 'patient-centred care'.

Q. What happens next?
 
As you progress through treatment and beyond, you will be asked to complete additional questionnaires (at least annually – frequency is determined by your diagnosis and treatment plan), allowing you to track your progress over time.
 
A reminder email will be sent 7 days in advance to the email address you provided, alerting you when a new questionnaire is available for completion.

Completing questionnaires over time, will enable you and your healthcare team to
  • track your progress,
  • gain a long-term view of the impact bowel cancer and treatment has had on you, and
  • identify areas where additional support might help you to live your best life.

Timeline

Timeline 2

PROMs 5
 
| Withdrawing from My Bowel Cancer, My Voice
 
Q. I have changed my mind and no longer wish to participate in My Bowel Cancer, My Voice. How can I withdraw?
 
To withdraw from My Bowel Cancer, My Voice, place your cursor over the profile icon at the top right of your dashboard. A drop-down panel will appear.
 
Select ‘Settings’ and the below screen will open.
 
Fill in your information and click the red ‘Withdraw’ button in the bottom left corner of the box.
Withdraw
 

Before allowing you to proceed a pop-up box will appear to confirm you would like to withdraw. If you are certain you no longer want to participate or have access to the system, click ‘Ok’ and your account will be cancelled.
Withdraw
Q. Who do I contact if I am having issues with my account?
 
If you are having any issues with your account, please email us or call our Helpline 1800 555 494 (AEST) during business hours.

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