It Takes a Village: The Power of Community

Our fictional orphan heroes did not make their journeys to self-hood without the help of others: they learned the ins and outs of survival from their communities. In The Lion King, the dynamic duo of Pumbaa the Warthog and Timon the Meerkat help Simba avoid being eaten alive. Similarly, Bambi is helped by his fellow forest creatures.

The same is true of patients and families affected by rare diseases. Sufferers and their loved ones jump at the chance to talk to someone with firsthand knowledge of their journey, situation, and future. Extrovertic witnessed this firsthand when we conducted a focus group among parents of children with Lennox-Gastaut Syndrome. (Lennox-Gastaut Syndrome is a particularly hard-to-treat form of early-onset epilepsy. By young adulthood, people with this syndrome often are difficult to manage.)

In our focus group, we had one mother with a young child and another mother with a son who is 15. It was clear that the mother of the teen was hesitant to talk about her difficulties, for fear of upsetting the other mother about what she might face as her child grew older. But the mother of the young child begged the experienced mom, saying, “Please give me advice. Please, if there is anything you can tell me, please do.”

Bio-pharma companies are often in a unique position to help patients and families form relationships with each other, either directly through research or patient meetings, or indirectly through support for patient advocacy organizations. In any case, these relationships are extremely valuable to patients and their families.

The relationship between patients and the bio-pharma companies is just as important and there’s a crucial difference between marketing a blockbuster and an orphan drug. For companies with an orphan drug, there must be strong, ongoing patient relationships throughout the company and across functions and levels. And unlike most blockbuster launches where patients are the last customer group to be considered, companies developing orphan drugs must actively incorporate patients and advocates early in the development process.

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Building these strong relationships requires an ongoing and significant investment in time and resources. As with any investment, it helps to have specified goals and metrics. Adapting from a terrific slide-share presentation by Debra Askanase, one metric to consider is Return on Engagement, which can be defined in this case as: “the time and investment spent participating or interacting with patients, and in turn, what transpired that’s worthy of measurement.”

What could be “worthy of measurement” in a relationship between an orphan drug company and its patient community? Here are some possibilities:

  • Clinical trial recruitment costs and timing
  • Number of patient stories and appearances available for use in FDA hearings
  • Media impressions generated by patient advocates
  • Number of patient-to-patient conversations
  • Sharing of company-sponsored or -developed content

It is also useful to set goals for some key metrics. For example, what percent of patients/families do you want engaging with your company? How do patients and their advocates rate you as a partner or valuable member of the community?

And let’s not forget the ultimate goal–survival. It’s not exactly a “pharma-friendly” world out there. As Simba can tell you, friends can keep you from being eaten alive!

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