As therapeutic development in FSHD advances, it is more important than ever for patients to be actively involved in research and clinical trials, in their own care, and in regulator and payor advocacy. The FSHD Society recently launched two platforms offering a bimodal, synergistic approach to patient engagement and stakeholder advocacy: BetterLife FSHD and FSHD Navigator. Here, we describe the objectives, operational approach, and initial learnings from the creation and launch of these platforms.
BetterLife FSHD takes an innovative approach to the traditional patient registry, utilizing research data collected from individuals to provide them personalized support tools within a digital health platform. These tools include health tracking and data visualization, matching to clinical trials and research opportunities, community polling, and a customized feed of resources from the FSHD Society. In complementary fashion, FSHD Navigator connects the community to information, guidance, and opportunities to engage through a relationship-centered approach, leveraging a network of trained patient and family volunteers. As an individual living with FSHD poignantly summarized, “There is nothing more beneficial to living your best life than having access to the knowledge of others that have walked the same path.”
In addition to serving patients and families, BetterLife FSHD and FSHD Navigator provide clinicians, researchers, industry, regulators, and payors access to real-world patient data, patient education and recruitment, and deep knowledge of the FSHD patient experience. Together, these platforms unlock capacity and impact for all stakeholders, powering therapeutic development and patient access in FSHD.