Tasmanian Community Network of Mentors and Smart Information Technology Solutions (SITS) for Families Affected by Cystic Fibrosis Print

This project will provide a comprehensive community support and education program for people and families affected by cystic fibrosis (CF). The project embraces the latest advances in chronic disease management by incorporating a health-mentor network to facilitate “self-efficacy” and confidence to “self-manage”. Supporting the project will be a website and novel self-monitoring IT tool in the form of a modified mobile phone. The self-recording facility will also be accessible via desktop computers if that is the preference. The project brings together clinicians, researchers and IT experts with the goal of developing innovative solutions to overcome barriers to good health care in a geographically dispersed CF population. The project will be self-sustaining within three years. The ultimate goal is to improve quality of life and longevity.

The project has three principal aims:

1. Improving access to educational material on CF covering topics in early infancy for parents and fertility, diabetes, transplantation and end of life issues for adults. There will be the introduction of weekly “talk to the expert” web-based seminars.

2. Increasing the availability of community support from peers and other families affected by CF through a secure Tasmanian-specific Chat Room facility

3. Introduction of a health-mentor system of trained health professionals to encourage the development of “self-efficacy,” “self-monitoring” and “self-management” skills.

Current Status: myCF diary component pilot testing (pilot concluded – currently in data analysis)

In October 2011 this project concluded its formal pilot trial of the symptom monitoring diary.  The aim of this pilot was for participants to use the symptom monitoring component of the web portal ‘myCF’. The symptom monitoring diary on myCF was designed to assist individuals with CF to monitor their symptoms.  In the future it is anticipated that this will combine with mentoring from a trained health care professional to improve self-monitoring and self-management.  The collation and analysis of the pilot data is now underway.