Connecting Through Patient Advocacy

By Tina Okun

Patient advocacy has emerged as an essential discipline within biopharma companies. As the official link to patient communities, these professionals provide valuable insights that guide everything from clinical trials to access programs. Likewise, advocates represent their companies to patients, families and patient organizations.

Serving as the voice of the patient – and often the voice of the company – is a significant responsibility with high stakes, including the health of individual patients. To advance the profession, our colleague Jean Campbell helped create and launch Professional Patient Advocates in Life Sciences, or PPALS.

Earlier this year, we joined roughly 60 patient advocates from industry and non-profits for the first PPALS conference at the Sanford Research Institute in Sioux Falls, South Dakota. Chris Smith had the privilege of leading the session on “Telling Your Patient Advocacy Story,” one of the courses required for PPALS accreditation. Here are some of the ideas generated through case studies and discussion:

  • Breaking through the noise by establishing a clear, credible voice for your company
  • Creating tools to help stakeholders understand the purpose of advocacy
  • Sharing corporate news when appropriate
  • Encouraging collaboration among patient organizations, not competition
  • Partnering with patients to tell their stories
  • Involving patient organizations in clinical trials and access programs

We left inspired, motivated and eager to return to Sioux Falls next year for more fun … and BBQ.