Just this past week, I was fortunate enough to participate in a telephone survey administered by a representative from GA Communication Group, a Chicago-based marketing agency that has partnered with BioMarin for the complete redesign of PKU.com. When I spoke with GA Communication Group, the agency was in the process of interviewing several subgroups of the PKU community including on- and off-diet patients, Kuvan patients, dieticians and PKU parents. The questions not only focused on the ways in which these groups used PKU.com, but there was also a genuine interest behind gaining more understanding into the complexities of receiving a diagnosis, talking about it with friends and family, as well as understanding the mechanics behind tracking and documenting phe intake.
There’s no surprise that a significant portion of the interview delved into the subject of new communication technologies. After all, a lot has changed in terms of the way we seek out and share information through online platforms. For example, when prepping for the telephone interview, I was surprised to learn that I had in fact created a PKU.com user profile when I first stumbled upon the site in 2007. Despite having registered an account, I didn’t actually fill out any of the empty fields under my profile. I speculated to the GA interviewer that in 2007 it was very likely that I was hesitant to put myself out there. Much has changed since then. Not only do I have a Facebook page, but most people I know would think I’m crazy if I didn’t have one!
GA Communication Group and BioMarin plan to wrap-up the research phase of the PKU.com redesign effort very soon. However, it will be several months before the rest of us get to see the final product. Ultimately, I would like to see the new PKU.com have a more user-friendly interface – one that can be easily accessed from any number of electronic devices. I’d also like to see a portion of the site used for communicating current PKU research initiatives. With BioMarin sponsoring this site, I’m not sure how much of a conflict of interest that might present if there are other companies interested in PKU research. Perhaps a strategic partnership with either the National PKU Alliance or some other non-profit organization for managing that portion of content would help resolve that dilemma.
On that note, how many of you regularly visit PKU.com? And if you’re familiar with the site, what would you change about it? I even thought it might cool to incorporate a Skype-like video conference feature so that registered users could chat with each other long distance. Whatever your thoughts are; be sure to submit them in the comments section below. Looking forward to hearing from you!