Pharma and online communities: What you should know
The pros and cons of online health communities
By on Oct 21, 2011My definition of a community is a forum where people can talk back and forth to each other.
Hence many of the biotech and pharmaceutical “community” websites are not true communities since they provide only one way communications.
To my knowledge, there are only two true online communities sponsored by pharma: Biomarin’s PKU.com and J&J’s ChildrenWithDiabetes.com.
Please let me know in the comments if I’ve inadvertently overlooked any other sites.
A few years ago I was part of the agency team that helped to build PKU.com.
Biomarin was in a unique situation when they decided to start this community.
Biomarin has the only FDA-approved treatment for PKU (Phenylketonuria).
At that time, there was no national patient organization, the online conversation was fragmented and the patients were looking for support.
As with many rare diseases, there was a lack of patient-friendly, accurate information about the disorder.
Importantly, Biomarin had a medical/legal/regulatory team that supported this idea and the ongoing moderation required.
The company was also committed to providing long-term support of PKU patients and families.
ChildrenWithDiabetes.com was started in 1995 by a father with a daughter with the condition.
In 2008, Johnson & Johnson began to sponsor the thriving community, which aligns with their portfolio of diabetes products. The site also accepts advertising.
There are certainly pros and cons to consider before a biopharma company sponsors an online community.
The pros: For patients, it can provide a needed, central resource, and for the company it can provide a leadership role and positively link them to the disease and the community.
The cons:
Involves a level of risk for company
Requires monitoring and long-term investment of resources
Curtails conversations around therapy/treatments
May limit participation by patients with anti-pharma bias
Attracting an audience may be challenging, especially if patients already have a community
There are health-specific community platforms (such as Inspire, DailyStrength and PatientsLikeMe) created for the purpose of patients gathering to talk about their health conditions.
Most are for-profit and are transparent about their business model of selling access to this patient data.
Social networks (the prime example being Facebook) are also being used to talk about health.
The pro to Facebook is the huge adoption and large numbers of people who are on the site on a daily basis. The cons: Facebook owns all the data and there are privacy concerns since anyone can view posts. They also make frequent interface changes.
With the new requirement that pharma Facebook community pages accept comments, the pros and cons are the same as the pharma sponsored community above.
There are also patient associations (Huntington’s Disease Society of America, American Cancer Society) that have communities as part of their websites.
These trusted nonprofits provide a more private and moderated place for people to communicate.
In the rare disease space, the National Organization for Rare Disorders (NORD) and EURORDIS (Rare Diseases Europe) offer another option. They are gradually starting rare disease communities via the site http://rarediseasecommunities.org.
Pharma companies can provide support and encouragement for these types of trusted communities.
Eileen O'Brien is director of search and innovation at Siren Interactive. She blogs at Sirensong.
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