Crohn’s and Colitis Australia (CCA) invites you to take part in an interview about your health and healthcare by telling – My IBD Story.
This sheet tells you what taking part involves. This will help you to decide if you want to take part. Participation is voluntary.
CCA will use what you tell us in our Quality of Care Program. This project aims to provide evidence to improve the quality of care for people living with IBD by ensuring person- centred outcomes for people living with IBD.
The purpose of the interview is to learn more about your experience of health and healthcare.
Part or all of what you say may appear in public reports and resources that CCA produces as part of the Quality of Care Program.
What is involved?
You’ll take part in an informal telephone interview. The aim is learn about your experience of health and healthcare. It will take between 30 minutes and 1 hour.
You’ll talk with Quality of Care Manager, Wayne Massuger. He may ask questions about things like noticing a change in your health, seeking medical assistance, diagnosis, treatment, living with your condition and your experience of health services. He may ask about what has worked well in your healthcare, and what could improve.
Wayne will give you a list of possible questions beforehand. You don’t have to read this list, but it may help you prepare their interview. If you’d prefer to talk about other things, that’s fine.
Talking about these topics could be upsetting. Please only talk about things you feel comfortable to talk about. If you’d rather not answer a question or questions, that’s fine. You can stop the interview any time.
After the interview CCA will invite you to:
Approve (and make any changes) to the transcript of your interview;
Identify the high and low points of your experience by placing stamps on your transcript and returning it to CCA;
Approving a depiction of your story as a ‘Patient Experience Journey Map’. This will be provided to decision-makers along with excerpts from the transcript of your story.
Your participation in each of these activities is voluntary. This means you do not have to take part in any of these activities.
What will you do with my information?
CCA may share your story and your Patient Journey Experience Map in publications and resources. These will be publicly available. CCA will be glad to share these publications with you. Your story and a graphic representation of it will also be presented to governments, funders, doctors and other health professionals to inform decisions about improving the quality of IBD care.
Your participation is anonymous.Your name will not be made public. This is to protect your privacy. We will try not to publish details that could let anyone guess who you are. It is possible you could be identified even though you are anonymous. For example, if you have a well-known experience or live in a small community, some readers may be able to identify you. Please be aware of this risk.
We won’t share your information unless you approve this.During your interview Wayne may take notes. If you agree, he will also audio-record the interview. He will send you a copy of the record of your interview for you to approve. If you’d like to suggest any changes at this time, he will be happy to work with you on these.
What if I change my mind?
You can withdraw from the project at any time. Please be aware that if you withdraw after you approve the final record of your interview, your story may already have been made public.
What if my story includes a difficult experience?
It can be upsetting to share a story about a difficult health experience. Before you decide to take part you may like to:
Talk about it with CCA.
Talk about it with someone you trust.
If reflecting on your experience is upsetting, it could help to:
Use a phone counselling service, such as BeyondBlue (1300 22 4636) or Lifelife (13 11 14).
Who else is involved in this project?
The interview method used in this project has been developed by the Consumers Health Forum of Australia (CHF). CHF is the national non-government organisation representing Australian healthcare consumers. CHF works to achieve safe, quality and timely healthcare for all Australians, supported by accessible health information and systems. The Australian Government Department of Health provided funding to CHF to develop this method. There is more information online at: www.chf.org.au/real-people-real-data-project.php
Where can I find out more? You can ask any questions by calling Wayne Massuger, Project Manager, CCA on (03) 9006 6973 during business hours or by emailing firstname.lastname@example.org.