My IBD Story

There is strong evidence that people’s stories about their healthcare provide valuable information for improving health.

share-your Crohn’s & Colitis Australia is gathering these stories in a structured way to analyse using a method developed by the Consumer Health Forum Australia.

The study will  involve people living with a confirmed diagnosis of Crohn’s disease or ulcerative colitis who will participate in an interview to describe their experience of the journey they have had living with the condition.

Who wll be surveyed?

• People with Crohn’s or colitis, regardless of how long they have had the disease or how severely it has affected them. We want stories that help us to understand the good and the bad of the quality of health care delivered.
• People living with IBD being treated through the public or private hospital system.
• Carers/parents of young children are welcome to participate.

What will be the benefits?

Analysis of the patient experience stories will provide practical evidence that will complement the results of the recent IBD hospital audit. It will ensure that improvements in planning and delivery of IBD care include the opinion of people living with IBD.

Information for those registered to participate

CCA has had an exceptional response from people willing to be involved in this study and expressions of interest are now closed.  Those registered will be advised of whether they are required for interview. Further information for those selected is available on the Information Sheet.

If you are selected for interview the process will be:

  1. Sign a ‘consent to participate’ document and return it to
  2. Participate in a phone interview (30 minutes- 1 hr) at a suitable time in June 2017.
  3. Review the notes taken by the interviewer to confirm your story is accurately reflected and highlight some key experiences.

If you have any queries feel free to contact Wayne Massuger on (03) 9006 6973.