Each life-impacting disease today has its set of highly engaged e-patients or “optimized me’s” (as Christine Kraft calls them). These patients do everything that is possible and imaginable to improve the quality and access to health care for the patient communities they serve.
They are of essential importance in influencing other patients’ behaviors and attitudes. They are often the number one source of information for patients seeking to start treatment. And for patients trying to adhere to their treatment they often play a crucial role serving as role models.
Influential bloggers, such as Ron Metcalfe, for example, reassure patients that they too can get through the side effects, reimbursement hassles and psychological impact of interferon treatment. Ron shared his personal treatment experience in a detailed treatment diary that became a main reference for any HepC patient trying to decide whether or not to go for treatment.
Community leaders such as Manny Hernandez from tudiabetes use their influence and community following to petition the almighty FDA to improve access to and quality of diabetes treatments. While Amy Tendrich uses her devoted diabetesmine following to crowdsource creative ideas on how to improve diabetic every day life.
Caregivers such as Nathan Lawrenson share their powerful personal stories with millions of people to raise awareness for a rare life threatening condition such as CF. Matthew Zachary from “I’m too young for this” uses social media technology to make sure young adults with cancer get the absolute best information and support available online.
These are just some examples of a new type of patient opinion leader (or POL) that uses knowledge and influence to move things for the common good of the online disease community. How do they do this? And how can pharma learn from this new stakeholder?
The successful patient opinion leaders of our age are mulit-format online: If they started with a successful blog, they will most likely also be involved with an online community or have created one themselves. They will use youtube and have large following on facebook and twitter. The new generation of patient opinion leaders are extremely skillful in using the cheap and easy-to-use tools provided by social media to engage with the largest possible online following: they are social media artists
I think it is important for pharma to understand this new type of stakeholder and to learn from them. It is these influencers that will know how to reach their online communities best. More importantly, they understand and appreciate the context and content of the community. They often play a key role (if not to say gatekeeper function) and thus need to be the first ones convinced of the value-add and sincerity of any pharma social media campaign.