As expected, the 3rd Annual Strengthening Patient Advocacy Relations across the Life Sciences conference offered a fantastic forum for advocacy and industry leaders to discuss collaboration in disease state awareness and treatment access. The conference also met my expectations by underscoring the importance of transparency in industry-advocacy relations.

What I did not expect was the volume of discussion focused on how patient advocacy groups may be open to talking with pharmaceutical companies about specific products.

The separation of church and state remains solid when it comes to external communication about specific medications. Unless you are a radical game-changer (e.g., Tysabri circa 2006), advocacy groups are rarely going to rally publicly in support of a specific pharmaceutical product. However, advocacy leaders attending the conference were clear about how they are willing and able to “talk brand” in ways that are ultimately in the best interest of their constituents.

This is an offer that individuals involved in pharmaceutical patient advocacy and marketing should seriously consider. Often individuals who work at patient advocacy groups are uniquely, personally connected to their organization’s mission. They typically have access to a deep reservoir of perspective that won’t always come through in traditional pharmaceutical insight-mining efforts. They also likely have knowledge about what has worked well or bombed in a particular space.

In light of their unique point of view, it only seems natural to consider seeking feedback from advocacy partners on a range of pharmaceutical efforts. Specific areas mentioned at the conference where advocacy groups can play a role include:

  • Clinical trial protocols, including eligibility, endpoints and quality of life standards, as well as trial recruitment materials
  • The development of next-generation products
  • Patient support service refinement (e.g., websites and call centers)
  • Direct-to-consumer advertising concepts and messaging

Seeking guidance from seasoned leaders of sophisticated organizations can help further underscore the power of the patient advocacy function and the value of meaningful relationships within the advocacy community. Through one-on-one meetings, surveys, focus groups and/or multi-group advisory boards, advocacy partners can be part of a solid community-based feedback loop.

Yet timing and intent are everything.  Stacy M. Lewis of the Young Survival Coalition captured this well when she requested that industry refrain from connecting “after you’ve done all the work, established your protocols, produced your materials, created your website, sent doctors your brochures and simply don’t understand why patients aren’t banging down your proverbial door.”

If you are going to seek this type of feedback from advocacy partners, ensure that you do so early  in your planning process and that you believe your leadership is open to not only listening but, when necessary, also incorporating feedback.  It is only in this scenario that it will be worth your time and the time of your advocacy partners.



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