Collaborating with Patient Advocacy Groups to Educate the Marketplace

Best Practices, LLC undertook this study to identify effective practices in patient advocacy group collaboration and relationship management. This study also examines the ideal structures and skill sets for pharma groups that deal with advocacy groups and emerging trends and challenges in patient advocacy.

Study Snapshot

Best Practices, LLC engaged 24 leaders supporting patient advocacy at 21 leading life sciences companies through a benchmarking survey. In-depth interviews were conducted to gather further insights pertinent to this study. More than 50% of participants are at the director/senior director level. More than 70% of participants are from the United States.

Key Findings

· Structuring High Performance Bio-Pharma Advocacy Groups: Companies participating in this study did not favor one type of organizational structure for their patient advocacy groups. The structural approach of participants’ advocacy organizations ranged between decentralized therapeutic area - focused groups, centralized groups and those with a hybrid structure. More than half of the companies consider their advocacy group structure effective. More than half of the companies who consider their structure effective use a centralized approach. Moreover, of the 11 companies that consider their structure ineffective, 45% would like to adopt a centralized structure to improve their operations.

· An Increasing Number of Patient Advocacy Groups are Involved in Clinical Trials: There are several factors that are considered important from the patient advocacy perspective - one such factor is increasing patient empowerment. Patient advocacy groups have taken a more active role in clinical trials – including funding, recruitment and design. Keeping this trend in mind, companies should find common ground between commercial and advocacy groups to build mutually beneficial relationships.