Advocacy Groups & Patient Engagement

Rare diseases are an area of intense focus for pharmaceutical R&D, but smaller patient populations pose challenges with everything from patient recruiting to understanding patient perspectives. Successful sponsors have connected with patient advocacy groups in order to learn about patient needs and to recruit clinical trial participants.

Relationships increasingly important

The active role such groups have played in pharma and biotech conferences in recent years points to the increasing importance of advocacy groups to the industry. So do the growing number of industry-sponsored patient portals and other tools to connect with patient communities. For example, earlier this summer AbbVie drove a global social media effort to connect and inspire those impacted by hidradenitis suppurativa(HS), a rare skin disease. The campaign, Voices of HS Unite, encouraged people to share their stories on social media with the hashtag #HSHope.

“AbbVie is committed to supporting those affected by HS,” said Dominiki Hochli, vice president, global medical affairs, AbbVie. “Voices of HS Unite aims to bring the community together by shining a light on their stories and elevating their voice so that they can receive the best possible support during all phases of their journey.”

 Does understanding go both ways?

Relationships between biopharma companies and advocacy groups can lead to deeper understanding of each other.

Patients learn:

  • Why the biopharma industry has not traditionally engaged patients on a personal level
  • Why medications cost what they do
  • What the industry is doing to make access to medications easier

Most important, patients learn that the people working in the biopharma industry really do care about them and work incredibly hard to make scientific breakthroughs, regardless of cost.

Clearly, patients gain a lot of understanding from these relationships. But what about biopharma? The industry gets deeper insights into the needs of patients with rare diseases, but that just scratches the surface of the range of information available from patients who live with these conditions.

What are the next steps?

How can the industry move beyond patient advocacy groups and begin to forge relationships with all patients taking our medicines? It isn’t easy, but it starts with listening carefully to those who are most impacted by our science and our medicines. Clinical SCORE has a proven processfor connecting biopharma companies with their patients. To learn more, email Blaine Cloud or call (877) 343-0100, ext. 1005.

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