Website review: Pku.com
*Biomarin-sponsored site about the metabolic disease phenylketonuria (PKU)*
By on Nov 26, 2010Biomarin-sponsored site about the metabolic disease phenylketonuria (PKU)
Overall rating ****
This is an excellent example of a pharmaceutical company providing disease education of high quality and creating a site for listening to and working with patients.
Content
The site is a perfect meld of brilliantly explained biochemistry, everyday experiences and tips, tools to help you understand and manage your disease and can-do attitude.
The use of scientific referencing throughout inspires confidence in the information without being overbearing. Particularly clever is the way the site uses aspects of the disease condition itself to enrich content.
Share your smarts, for example, is a fabulous way of getting members to interact while reminding them that one of the symptoms of phenylketonuria (PKU) is brain fogginess.
PKU involves, among other things, the inability to metabolize the amino acid phenylalanine (phe). If phe accumulates in the body, it can cause progressive brain damage and seizures.
Furthermore, the cartoons used throughout the site perfectly complement the copy, but users can also gain a lot of knowledge very quickly by just whizzing through the pictures.
Collaboration
The site is full of appropriate and encouraging collaborations and links to other sources, the mark of a confident patient site that sheds ego and in doing so gains trust and respect.
There are collaborations with the Cook for love organization, for example, and links to information specifically about the Biomarin product for pku.
More could be done to link physicians and researchers to patients. It would also be interesting to see commercial collaborations with low-phe food providers.
It would be good to see more downloadable tools and maybe some apps that enhance patient commitment to lowering phe levels.
Not having any therapeutic product info on the site becomes frustrating.
Community
There are several community features. They are typically guarded and limited in the usual pharma way, but still there are blogs, forums, groups, and info about nearby clinics.
Much more could be done to engage a competitive spirit about phe levels, especially among teenage patients. There are also opportunities for better carer interactions and activities.
There is scope to prepare more interactive meal planners in which a user could pick and choose from a listing of low-phe content foods. Perhaps a find me a restaurant that follows low-phe rules online resource would really help with what the site says is a common problem for patientswhere to eat out.
Character
Sassy, smart, and super. The tone and approach throughout the site are of positive possibilities. The site clearly aims to be a cheerleader for patients with pku and/or their carers.
It is compassionate without condescension, and helps members absorb quite menacing facts while highlighting to patients/carers what they can do and convincing them that the goals are achievable.
Commitment
This site encourages commitment rather than demands it. It is persuasive without being overbearing.
The website review is a regular feature of eyeforpharmas Patient Compliance newsletter. If you would like to suggest a site for review, please contact editor James Geary (jgeary@eyeforpharma.com).