March 11, 2021
Outlining Our Paths to Impact and Change
Rachel Giles, MD, PhD (IKCC Chair)
Von Hippel-Lindau Organisation / Living with Bladder or Kidney Cancer Netherlands
Dr Rachel Giles has experience as Associate Professor of Internal Medicine at the University Medical Center Utrecht in the Netherlands and is the Science Officer and Medical Education Specialist at Medicom Medical Publishers in Baarn, the Netherlands. She has been active in advocacy for patients with inherited kidney cancer since 2003 and has been chair of the Dutch VHL Organisation since 2009. Rachel is Chair of IKCC and represents IKCC on the EAU Guidelines Committee for renal cell carcinoma.
International Kidney Cancer Coalition on social media:
During February’s COVID Advocacy Exchange session, we launched the 2021 Working Groups, each focused on creating meaningful change in a high-priority area, including Health Equity: Racial & Ethnic Health and Healthcare Disparities; Health Equity: Access to Care; Patient Voice/Patient-Focused Drug Development (PFDD); and The Future of Advocacy.
As individuals experience these topics in different ways, our first Working Group session was focused on understanding meaning to establish a common baseline from which to grow. As we continue to build a strong foundation for success, our second Working Group session on March 11 will identify those people who are most impacted in each of these areas, and the stakeholders we need to engage to create meaningful change. We welcome you to review the key insights from the February Working Group session in preparation for this upcoming gathering about creating our future, together.
Working Group Descriptions
1. Health Equity: Racial & Ethnic Health and Healthcare Disparities
Led by Sheila Thorne and Jessica Valence
BMS Champions: Tammi Fanson and Kemi Osundina
Description: Where we live should not determine our health. Structural, institutional and systemic disparities need to be addressed within a sociocultural community context for all people to have equitable health and healthcare. This working group will engage in courageous conversations to better understand how we arrived where we are today, the current environment and initiate tangible steps towards correcting inequities.
2. Health Equity: Access to Care
Led by Brad Love and Eileen Shannon
BMS Champions: Brian Lee and Nilam Perpich
Advancements in medicine and technology are creating better outcomes than ever, which makes the persistence of disparities in accessing care even more devastating. This working group will take an unflinching look at current access inequities to define and then contribute to the change needed to bridge this gap.
3. Patient Voice/Patient-Focused Drug Development (PFDD)
Led by Neil Bertelsen/Dave Fuehrer and Christian Bullock
BMS Champions: Miryah Morris and Birgit Roy
Patient involvement is increasingly being recognized as important to successful research and development of medicines and care. Patient-focused drug development (PFDD) is an emerging set of practices for engagement with patients and generating data on patients’ and caregivers’ experience. This working group will consider current guidances and practices to identify needed tools and resources to further promote and embed good practices.
4. The Future of Advocacy
Led by Gary Nolan and Lauren Lastauskas
BMS Champion: Chad Saward
The role of patient advocacy organizations is changing. There are increased demands and new challenges, as well as emerging opportunities to create meaningful change within the healthcare system. This working group will define where advocacy has been, where it is today, and create tangible steps toward defining the future of advocacy and ensuring that patients have an equal seat at the table.
Neil Bertelsen, HTAi Patient and Citizen Involvement Group
Neil has over 25 years’ experience in bringing the patient voice to life for healthcare decision makers. Neil has been a patient advocate, and is the past chair of HTAi’s patient & citizen involvement group where he continues to work with HTA bodies around the world on improvements to patient engagement in HTA. Neil is also a board member of Patient Focused Medicines Development, an international multi-stakeholder effort to bring patients into the heart of medicine research and development. Neil regularly works with patient groups, healthcare decision-makers and the industry to collectively develop approaches that benefit patients.
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Christian Bullock, Director of Digital Strategy, GRYT Health
Christian is a lymphoma survivor who joined GRYT Health in 2018. He has over 14 years of digital marketing experience focusing on search engine optimization and pay-per-click / social media advertising. After going through his own diagnosis and treatment, he wanted to give back by providing patients and caregivers information and resources to help them during their own unique experiences. He works at GRYT Health due to the humanity, passion, and drive of the company and team's mission.
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David Fuehrer, CEO, and Co-Founder, GRYT Health
Dave Fuehrer is a two-time cancer survivor, oncology researcher, and patient experience champion. He is CEO and co-founder of GRYT (“grit”) Health, a digital health company that connects individuals with similar experiences and engages them to inform, support, and facilitate improved disease management and patient well-being.
Through GRYT’s global oncology platform and work with the top healthcare organizations, we help advance the treatment, care, and experience of those affected by cancer. We do this through research, marketing, and clinical trial services that put people and caregivers first, integrating the patient experience – from early-stage treatments through long-term survivorship – to ultimately improve health outcomes.
In his recent TED Talk, Dave describes how he has catalyzed personal adversity, patient experience research, and digital technology to create a platform to connect, empower, and transform the living-with-cancer experience.
Dave has a BS in Technical Communication and an MBA in Technology Management, from Rochester Institute of Technology. He has completed Executive Education at Harvard Business School in Building New Ventures and at MIT in Corporate Strategy.
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Lauren Lastauskas, Program Director, GRYT Health and Cervical Cancer Survivor
Lauren Lastauskas is a cervical cancer survivor and program director for GRYT Health. In this role, she focuses on improving the quality of life and treatment of cancer survivors through programs that help the community feel empowered in connections, education and advocacy.
Lauren lives in South Carolina and received her bachelor’s degree in Biology from Coastal Carolina University, magna cum laude. She has a clinical healthcare background and quickly became more passionate about patient advocacy after being diagnosed with cancer at 23. She volunteers with various organizations and frequently shares her cervical cancer story with medical professionals, schools, industry and the community.
Lauren enjoys spending her free time with family and friends, trying new restaurants, being outdoors, and traveling.
Contact Lauren at:
Brad Love, Ph.D., Co-Founder and Chief Culture Officer, GRYT Health
Brad Love works to help people thrive. At the University of Texas at Austin, he serves as University Distinguished Teaching Professor and an associate professor in the Center for Health Communication, where his work largely focuses on improving quality of life for young adults affected by cancer. In particular, his research focuses on boosting access to mental health, social, and informational support. Love's projects have been supported by MD Anderson Cancer Center, the Livestrong Foundation, and the American Cancer Society, among others.
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Gary Nolan, Independent Advisor
Utilizing over 15 years of medical communications experience, Gary has developed a unique skill in forming, facilitating and nurturing community collaborations, in order to support mutually beneficial outcomes.
Over the years Gary has supported numerous communities in identifying common educational needs, navigating sensitivities and co-creating alliances. All initiatives are nationally neutral, yet globally inclusive, and strive to lift levels of knowledge. Gary applies his passion and scientific rigor to all partnerships and the collaborations he supports.
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Eileen Shannon, Vice President of Client Relations, GRYT Health
Eileen brings over 14 years of experience in non-profit fundraising and alumni relations to her role as Vice President of Client Relations for GRYT Health. Her areas of expertise include relationship management, prospect development, and operations. Eileen strives to identify the passion and develop the connection that keeps people engaged with the organizations they care about. In her current role, she works closely with GRYT champions within client organizations to learn what makes them most proud of their work with GRYT, and to help align GRYT’s staff to deliver those results. As a supporter of both family and friends who have experienced cancer, Eileen finds profound personal meaning in GRYT’s mission to improve the quality of life for people facing cancer by empowering them to be in charge of their health through education, engagement and support. Eileen holds a B.S. in Professional & Technical Communication and an M.S. in Communication & Media Technologies, both from Rochester Institute of Technology.
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Sheila Thorne, President and CEO, Multicultural Healthcare Marketing Group, LLC
A native New Yorker and former senior executive in five preeminent marketing and communications companies, Sheila has spent more than two decades designing marketing, media and health education campaigns for the top 50 pharmaceutical companies across a broad range of therapeutic categories from molecule to market. A former high school teacher of foreign languages, she has worked on behalf of the healthcare industry throughout North America, Western Europe and Latin America with a focus on communities of color. She teaches and has lectured on health equity and cultural competency at Quinnipiac University School of Medicine, Rutgers, New York University and Queens College. She has given over 250 keynote presentations and conducted workshops on cultural competency, anti-bias and diversity. She is published in Pharmaceutical Executive, PharmaVoice, Medical, Marketing & Media and numerous articles published in a variety of consumer health and ethnic publications. Sheila is known for her unique ability to galvanize communities of color around health and social justice issues. She has been featured in Essence Magazine, Black Enterprise, The Positive Community, Madame Noire, The Network Journal and a frequent panelist during the sessions of the annual Congressional Black Caucus Health Braintrust, Congressional Hispanic Caucus Health Institute and the Asian Pacific Islander American Health Forum. Sheila has received numerous awards for her innovative health marketing strategies to reach people of color.
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Jessica Valence, VP Team Operations, GRYT Health, and Cancer Survivor with PALB2 Mutation
As Vice President of Team Operations at GRYT Health, Jessica Valence helps build awareness of what it means to live your life with grit (“GRYT”). At 25 years old, she had to fight for her own cancer diagnosis; as a young woman, five doctors refused to complete the diagnostic evaluation for colorectal cancer. Eventually, she was told she had Stage 3 cancer and was given a two-month prognosis. Following treatment, Jess’ nurse practitioner suggested genetic testing, which revealed a PalB2 mutation. Originally overwhelmed with her diagnosis, after embracing other survivors in the cancer community her outlook changed. She now uses her skills and experience as a patient and survivor to help those in the GRYT community find resources, their voice and be their own advocate.
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