Use of electronic and social media

Jo Osmond, Director of Clinical Care and Commissioning, attended a session on use of electronic and social media to improve adherence and support without crossing boundaries.

"I attended this workshop which discussed several pilot studies that have been undertaken to consider the use of electronic and social media to improve adherence and education.   

A 12-month study in Cincinnati showed a 50% improvement in attendance at outpatient clinics with the use of text message reminders. The same study also showed a 35% improvement in adherence with text medication reminders.   

A follow-up questionnaire revealed that parents felt that they would benefit from being able to communicate with other parents, and share knowledge and concerns. They also felt that they would benefit from being able to connect with members of their clinical teams. Patients themselves also felt that they would benefit from use of social media in terms of knowledge sharing, ideas sharing and support. 

As a result of this work in the US a new website has been established called CFfone, with age-appropriate signposting for patients into 11-17 yrs and 18+.    

Of course, in the UK parents and patients make good and regular use of the CF forum via the CF Trust website, and also chat via the CF Trust Facebook page but maybe there is scope for use of text messaging between clinical teams, patients and families to improve education and adherence."