Why the CF Hub?
Cystic Fibrosis (CF) care, like many other chronic illness’s is constantly evolving as new research comes about. The old ways of conducting things make way for the new. One of those ‘old ways’ that has been aggressively changed over the past couple of years is in the area of CF to CF spreading of bacteria.
As many of you with CF around the world (and your families) would know, strict cross infection protocols have been introduced. This has been in the hope of minimising the spread of dangerous bacteria. These include Methicillin-resistant Staphylococcus aureus (MRSA), Pseudomonas aeruginosa (Pseudomonas) and Burkholderia cenocepacia (Cepacia) to name a few. While this approach has stemmed the tide of cross infecting among the CF population, a noticeable consequence has occurred.
The social isolation of CF patients has been quite obvious. Once CF patients could gather and discuss individual treatments; what works and what doesn’t. Chat as a distraction to their own issues or have a laugh. CFs generally have a very dark sense of humour as a way to cope :).
It was found that a gap in the CF information sphere existed. In particular for older adolescents and young adults in getting peer to peer information as well as fact checked medial based information. Hence the need for the CF Hub.
The design and build process
The CF Hub logo was designed by project team member Renee Falconer. A call was placed through social media encouraging people to submit ideas. Other logo concepts were submitted to the group but Renee’s efforts proved to be most popular.
The idea behind the logo is the swirl represents coffee and the font that was selected proved easy to read against both light and dark backgrounds and at a smaller size as well.
The site was developed by web designer Paul McKean (also a CF patient). Idea meetings took place between Paul and project officer’s Kate and Renee to determine layout, styling and content. The meetings also set the parameters of the site. What was to be included in the CF Hub phase I, and what could be included at a later date in the CF Hub phase II.
When undertaking a project like this, It is equally important deciding what to include in the project as well as what NOT to include.
Content has been largely consumer directed. Initially gaps were identified in easily available CF related information (peer to peer information). This formed the basis of what the CF Hub should be about. ‘Experience’ pieces were developed and requested as a way of providing information to other CFs that wasn’t too ‘preachy’ but was from a peer perspective.
Topics such as travelling with CF, equipment used by CFs and recipes either developed for or modified to be CF specific were sought after.
Due to the deteriorating nature of CF, a meditation section was incorporated in the hope that people could access these mantra’s to aid in calming anxiety.
Engaging with our consumers
People do not normally visit a website everyday looking for new content. Both these social media accounts have proven successful in increasing the number of people viewing the site. This information was gained using Google Analytics.
Enough content has been gathered initially to allow the scheduling of posts periodically for the first few months while the site gains traction. Social media will be the primary source for requesting new content.