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What does it take to grow a patient advocacy group from the ground up to become a driving force for patients in the US? Learn how Julie Block, President and CEO of the National Eczema Association (NEA), defined a bold long-term vision and learned to trust her team to stay true to the plan. Defining a five-year strategic blueprint, NEA took a broad view of stakeholders throughout the healthcare ecosystem, enabling them to set bold goals for what could be achieved through partnerships. Julie’s personal growth as a leader blends humility with fearlessness. In this episode, Sanofi host Eric Racine and co-host Nick Taylor discuss with Julie the challenges, successes, and strategic planning that goes into successfully leading a patient advocacy group while keeping values at the forefront.
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What does it take to improve access to specialty care for vulnerable and underserved populations? What if the starting point is a complete lack of specialty care services? When Kim Thiboldeaux, CEO of the Northeast Business Group on Health, was told there was no cancer or specialty care on Native American reservations, her first reaction was shock, then it quickly turned to advocacy and action. After years of hard work and perseverance, the first cancer center on native land was opened on the Navajo Nation, whose more than 40K members comprise the largest federally recognized tribe in the United States. Sanofi host Eric Racine and co-host Elizabeth Franklin discuss with Kim how she helped bring cancer care tailored to the needs of the Navajo Nation. It’s an incredible story of listening, empathy, relentless dedication, and a promise kept.
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Cancer can be an isolating condition, so Meredith Cowden has made it her mission to ensure other patients are not alone. Meredith, a cancer survivor living with chronic graft versus host disease (cGVHD), responded to adversity by forming the Meredith A. Cowden Foundation with her family to support and advocate for fellow transplant patients. The key to Meredith’s success is her ability to advocate and form a successful alliance of advocacy groups that strengthens their ability to help and advocate for the cGVHD community. In this episode, Sanofi host Eric Racine and co-host Angie Bricco discuss with Meredith the keys to forming successful advocacy group alliances that encourage communication and collaboration to effectively help meet patient needs.
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Impact is a word we often use in patient advocacy. We know it’s important to the patients and communities being served, and that it also matters to the funders of advocacy programs. But how do you capture impact, when do you start, where does the information come from, and how should it be communicated? Sanofi host Eric Racine and co-host Elizabeth Franklin discuss this with our guest, Aicha Diallo, patient advocacy leader and senior director of programs at the Patient Empowerment Network (PEN), shares a methodology for capturing and communicating the impact of advocacy programs. Learn how PEN listens to the needs of their audience, involves patients and community partners in defining impact, and creates a process for ongoing data collection. Access to the right data enables clear communications with their important stakeholders. Aicha’s impressive public health background and unique ability to keep a finger on the pulse of the communities she serves equips her with a wealth of knowledge that she shares in this episode.
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Building trust and improving health in underserved communities can be a daunting challenge. Most would agree that “it takes a village,” but how do you create that village, and who are the right partners? In this premier episode of “Patient Advocacy Voices,” Sanofi host Eric Racine and his co-host Courtney Peters discuss this challenge with Dr. Laura Lee Hall, a patient advocacy leader and President Emeritus of the National Minority Quality Forum (NMQF) Center for Sustainable Health Care Quality and Equity. Dr. Hall saw disparities in influenza immunization rates in communities of color and decided to do something about it. In this episode, Eric and Courtney discuss with Dr. Hall how she connected clinical care providers in local healthcare systems with community organizations and national partners to improve outcomes and equitable care through the DRIVE initiative, Demonstrating Real Improvement in Value and Equity. Because of its success, the DRIVE program keeps expanding and now extends to other health conditions and inequities. The results are impressive, and Dr. Hall’s insights have universal applicability for advocacy programs across therapeutic areas.
