By Derek Ansel, MS, CCRA, Senior Director, Therapeutic Strategy Lead, Rare Diseases, Worldwide Clinical Trials
We know a road paved with good intentions can still lead to…well, not the destination you intended. The emphasis on patient-focused trials which reduce barriers to participation has increased access for patients, but it has also led to one-sided, transactional relationships between industry and advocacy groups. To better meet the needs of the patients we both ultimately serve, we need to focus on building mutually beneficial, sustainable relationships which achieve the goals of both sets of stakeholders.
Having worked in rare disease clinical research for over ten years in a very patient-focused role, I have worked with many advocacy groups both large and small and have found one thing to be certain—working together, we achieve far more than working separately. It is a worthwhile time commitment for pharma, biotech, and CROs to invest in the advocacy groups we work with—but how?