Following a controversial Supreme Court battle and final decision concerning gene patenting, Myriad Genetics found itself in need of repairing relationships with patient advocacy groups (PAGs). As a pioneer and leader in hereditary gene testing for cancer, Myriad wanted to restore trust and continue to be viewed as a key resource for patients. The launch of Myriad’s myRisk® Hereditary Cancer test provided just the opportunity. Continuum was tasked with building a program that would break down the silos that exist among the cancer-specific PAGs and equip them to educate their respective constituents about other cancers for which they may also be at risk.
Cancer patient journeys are as diverse as cancer itself. With this in mind, it was critical that these disparate PAGs learn from each other how to communicate with their respective audiences. Continuum helped Myriad convene 14 different PAGs across an array of cancer types for the first-ever Patient Advocacy Group Summit. Held in Salt Lake City near Myriad headquarters, the meeting enabled the PAGs to share best practices on how to educate their patient base as well as discuss how best to meet the challenges they faced in this new world of multi-gene panel testing. While groundbreaking in itself, this meeting became the foundation for working with all 14 groups to create a first-ever best practices paper authored by all Summit participants.
- The best practices paper Understanding Hereditary Cancer in the Era of Multi-Gene Panel Testing was co-authored by all 14 PAGs and published on the unbranded site www.geneticpaneltesting.org
- All PAGS promoted the publication through traditional and social mediums
- PAG relationships were deepened with Myriad, despite their challenging histories