Patient stories are powerful advocacy tools. We are now in the age that enables us to use advanced technology to unfold these stories – as a result, the newest patient-reported, evidence-based tools allow patient advocacy groups to capture analytics and insights into the journey of each patient and leverage these data points to deliver better care, helping patients, their families, and care teams.
Watch this unique on-demand 2-hour training by Alira Health to learn more about how technology better catalyzes patient outcomes.
The training consists of 3 individual sessions. Use the timestamps below to navigation the recording.
New registries are emerging that are often orchestrated by independent third parties, including patient advocacy organizations. Unlike registries driven by providers and academic medical centers, these patient-driven registries aggregate data from several sources. A few highlights in this new generation of registries include:
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Paul Strumph
Board of Directors, Myasthenia Gravis Foundation of America; Consulting Chief Medical Officer, Diabetes, Metabolism, and Endocrinology
Paul Strumph has served on the Board of Directors of the College Diabetes Network since 2016 and the Myasthenia Gravis Foundation of America since 2020. He is a consultant in Pharmaceutical Research and Development with over 25 years of experience in the field. Previous positions include Chief Medical Officer at Metavant Sciences; Vice President, Clinical Development at Lexicon Pharmaceuticals, North American Regional Chief Medical Officer at Quintiles (now IQVIA), and Chief Medical Officer at the non-profit Juvenile Diabetes Research Foundation (JDRF). Earlier in his career, Paul held roles of increasing responsibility at GlaxoSmithKline, Merck KGaA/EMD, and Bristol Myers Squibb & Co.
There is a lack of technologically advanced tools available to several high-risk patient populations such as prostate cancer patients and specifically Veterans with prostate cancer. So, the need to educate these patients and caregivers on screening policies, treatment options, mental health supportive services, navigation of the medical system both within and through the Community Care Network, along with post-care monitoring and any required intervention to address toxic events cannot be overstated.
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Michael Crosby
Founder and CEO, Veterans Prostate Cancer Awareness
CDR Crosby is the founder and CEO of Veterans Prostate Cancer Awareness (VPCa) a 501(c)3 non-profit organization formed in 2016 when CDR Crosby recognized a need to raise awareness of prostate cancer among the Veteran population. VPCa was formed to provide prostate cancer educational resources and conduct awareness activities in support of Veterans and Active military populations. The focus of the effort is to highlight the need to screen for the disease, support men in their treatment decisions, and promote the newest technology for the treatment and cure of prostate cancer.
Having the patient’s voice heard in all aspects of medication development, regulatory issues, and discussions about chronic disease management is imperative for improving the quality of life for patients. This focus creates a unique opportunity to influence Pharma companies to fund research projects with a holistic patient-centered approach.
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Tonya Winders, MBA,
President and Chief Executive Officer, Allergy and Asthma Network
Tonya first started serving as an advocate when as a child she stood up for herself and others on the playground. In 2004, she learned the importance of patient empowerment when she overcame a rare form of cancer. Today, Tonya has more than 20 years of experience in leadership roles within the allergy and asthma industry.
From sales and marketing leadership to managed markets access, she works tirelessly to ensure patients have access to effective diagnostic and treatment tools. Tonya serves on several expert panels including Global Initiative for Asthma (GINA) and the American Thoracic Society Public Advisory Roundtable. She serves as Chair of the Board of Directors of the American Respiratory Care Foundation and is the current President of the Global Allergy & Airways Patient Platform, representing 60+ respiratory patient organizations throughout the world.
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