Digital Pharma: Merck Serono expands PKU website
Published on 16/03/10 at 11:41am
Merck Serono has expanded its European phenylketonuria disease awareness website, adding versions in French and Spanish.
The website was originally launched in English last November and the company plans to add further European languages, including German and Italian, later this year.
The site contains information for parents of newborn babies, families with young children, teenagers and young people, and adults with phenylketonuria (PKU).
The genetic disorder affecting approximately 50,000 diagnosed patients in the developed world and occurs when the body fails to break down an essential amino acid called Phenylalanine (Phe), which can be found in protein-rich food.
Newborn screening efforts implemented in the 1960s and early 1970s sees virtually all PKU patients in developed countries diagnosed at birth.
Merck’s Kuvan was launched in Europe last year and is the only licensed treatment for PKU.
The expansion of the disease awareness site tackles a key problem for European pharma, how to bridge the continent’s linguistic variety, but it also suggests a comparison with its US counterpart.
A tale of two websites
The US version of the website is run by Merck Serono’s Kuvan partner BioMarin and offers a marked contrast to the European site.
Billed as a ‘community’ for PKU patients, it’s brighter, bolder and feature-heavy, with patient blogs, a forum and even sharing of photo albums.
Logged-in users have access to Facebook-like functionality that allows them to connect with other users, exchange messages, participate in chat rooms and add apps.
Whether any of these community functions will come to Europe remains to be seen, although when launching the European site last year Merck Serono did refer to plans for its site to be “enriched with new tools”.
The site opens up a number of interesting questions around patient communities and language in Europe:
• Are bespoke patient communities the best way for pharma to engage online or should companies work with established communities instead?
• The more languages you make health material available in, the easier it is for patients from different countries and backgrounds to access it. But how far should pharma go to make material available in other languages beyond the web’s lingua franca of English?
What do you think? Please login and leave a comment to share your views.
Dominic Tyer is web editor for Pharmafocus and InPharm.com and the author of the Digital Pharma blog He can be contacted via email, Twitter or LinkedIn.
- Login or register to post comments
- Printer-friendly version
Comments
To bring a patient perspective to all of this I would encourage you to become acqainted with a relatively recent Code of Practice between patient organisations and the healthcare industry which was initiated by patient groups who are members of the Patients' and Consumers' Working Party (PCWP) at the European Medicines Agency (EMA): http://www.eurordis.org/content/promoting-ngo-transparency
The Code itself is now endorsed by EURORDIS (Rare Diseases Europe) and 15 European-wide patient organisations and is available here
In this code of practise you will note that 'disease awareness campaigns must respond to a public health need that arises from patients and/or public health authorities' and furthermore encourages patient organisations to 'ensure that any such campaign is not only an industry initiative, but responds to a well characterised public health need, that is agreed and supported by the national and/or European public health authorities'
There is good reason for this and enough precedents to show that Industry needs to demonstrate a more collegiate approach before embarking on campaigns such as this one which while well intentioned do little to stem the tide of mistrust towards it as regards its record as a source of quality unbiased information. Indeed can Merck come out and answer the question: How significant is the fact that you are having problems with the reimbursement of your new pku treatment on your motivation behind this site in Europe?
Denis Costello
Web Communication Manager - EURORDIS
Thanks for the comment Denis.
While my intention with this post was more to highlight moves that challenge the anglo-centricity of healthcare information on the web - and the web in general of course, it's always useful to have a patient perspective.
Dominic
Web Editor, InPharm.com
Merck Serono also need to be careful in the UK: The MHRA Blue Guide section on Disease Awareness Campaign Guidelines state; (my italics)
" DACs for diseases or conditions where there is only one, one leading or few medicinal treatments potentially draw attention to one medicinal product, albeit indirectly, regardless of whether it is referred to or not. DACs in these circumstances require particular care. It is particularly important that these campaigns focus on health and disease education, with details of where to get appropriate advice"
..and the ABPI code
"A company may conduct a disease awareness or public health campaign provided that the purpose is to encourage members of the public to seek treatment for their symptoms
while in no way promoting the use of a specific medicine.
The use of brand or non-proprietary names and/or restricting the range of treatments described in the campaign might be likely to lead to the use of a specific medicine. Particular care must be taken where the company’s product, even though not named, is the only medicine relevant to the disease or symptoms in question."