Center for Innovation & Value Research

Research has the power to transform healthcare, but its impact depends on how effectively it is communicated. This session will explore strategies for translating patient-centered research into actionable insights that drive real-world improvements in care and value. Join us for a discussion on engaging diverse audiences, bridging the gap between data and decision-making, and ensuring that research findings lead to meaningful healthcare change. Panelists: Kimberly Westrich, MA, Chief Strategy Officer, National Pharmaceutical Council Jessica Johnson, MPH Director, Community Research & Engagement National Eczema Association (NEA) Bridget Doherty, MPH, MS, Johnson & Johnson Innovative Medicine, Director of Access and Policy Research On-Site Registration: https://ow.ly/T59550UUorW Live-Stream Registration: https://ow.ly/CAMH50UUorU

Today is National Caregivers Day—a day to honor the millions of family caregivers whose relentless dedication often goes unnoticed. Caregivers surround us every day, quietly giving their time, energy, and love to others, often at the expense of their own well-being. At the Center for Innovation & Value Research, we deeply value the role caregivers play and are committed to supporting those who tirelessly support others. Join the third workshop in our Patient-Centered Economic Impacts Project on February 26, 2025, 1–3 PM ET. Explore how caregiving shapes patient care and economic realities with expert insights. Register now: https://lnkd.in/eGN-HN-v #NationalCaregiversDay #SupportCaregivers #CaregiverResources

Mike Herman’s journey as a cancer survivor is a testament to resilience, advocacy, and the importance of a comprehensive approach to patient care. His story sheds light on the medical, economic, and personal challenges cancer patients face and underscores the critical role of support systems and research in overcoming these challenges. Mike Herman founded Speaking on Cancer Patient Advocacy (SoCPA). SoCPA’s mission is to educate for a cancer-free tomorrow. Learn more about Mike's patient story:https://ow.ly/58Aq50TvFPo #healthequity #patientstory #equity #hta #patientcentered

The Center and EveryLife Foundation for Rare Diseases partnered to define common patient-centered outcomes and address unique research challenges in rare diseases. Thanks Alexion AstraZeneca Rare Disease for supporting this critical work. Link: https://ow.ly/zVEC50USl7X #PatientEngagement #RareDiseaseResearch #PatientOutcomes #HealthPolicy #RareDiseaseCollaboration https://ow.ly/8Tt450USl7W

This month, we recognize and express our gratitude to the Center's member organizations and advocates dedicated to improving the lives of individuals and families affected by rare diseases. Their tireless efforts in research, policy, and patient support drive meaningful change and bring hope to so many. We are proud to collaborate with: • Dravet Syndrome Foundation • EveryLife Foundation for Rare Diseases • Foundation For Sarcoidosis Research • International Rett Syndrome Foundation • National Organization for Rare Disorders • Alexion Pharmaceuticals, Inc., AstraZeneca Rare Disease We appreciate their leadership, advocacy, and commitment to advancing care, treatment, and awareness for the rare disease community. Together, we continue working toward a future of improved outcomes and equitable access for all. #RareDiseaseMonth #RareDiseaseAwareness #AdvocacyMatters #PatientCentered #DravetSyndrome #Sarcoidosis #RettSyndrome #RareDiseases #HealthcareInnovation #EveryLifeCounts #NORD #Alexion #AstraZeneca #ResearchMatters #TogetherForRare

How can patient data and AI transform rare disease research in real time? This panel will explore innovative strategies for integrating AI into research methodologies, ensuring studies evolve alongside patient needs and clinical advancements. Join experts Sarita Edwards (The E.WE Foundation), Harsha K Rajasimha (Jeeva Clinical Trials Inc. Inc), and Simu Thomas PhD (Alexion Pharmaceuticals, Inc. AstraZeneca Rare Disease) as they discuss how AI-driven insights can bridge evidence gaps and optimize research outcomes. Don't miss this critical conversation on the future of rare disease research! Methods Summit On-Site Registration: https://lnkd.in/eWCuFrMd Methods Summit Live-Stream Registration: https://lnkd.in/eUbH_hvz #AIinHealthcare #RareDiseaseResearch #PatientData #MethodsSummit2025

Caregivers play a critical role in rare disease management, yet their experiences are often overlooked in research and policy. In our latest commentary, Dominique Seo, MPH (Health Equity Fellow, the Center). Gloria Rodriguez, MPH, Health Equity Coordinator, Dravet Syndrome Foundation), and Yuan-Yuan Michelle Cheng, MHS (Research Manager, the Center) highlight the financial, emotional, and social burdens caregivers face and the need to integrate their perspectives into healthcare decision-making. At the Center for Innovation & Value Research, our Rare Disease Project explores ways to incorporate caregiver experiences into comparative effectiveness research and health technology assessment. Gloria Rodriguez’s journey as a caregiver for her daughter Grace, who has Dravet Syndrome, underscores the need for stronger support systems and policies that recognize caregiver contributions. Read the full commentary to learn more: https://ow.ly/uewh50V2GVv Learn more about the Rare Disease Project here: https://lnkd.in/eJan-e-T

Are you a researcher in PCOR, CER, or HEOR? Don’t miss the opportunity to expand your expertise and enhance your methodologies at the third Patient-Centered Economic Impacts workshop. Why You Should Attend: • Deepen your understanding of caregiving’s economic impacts. • Collaborate with caregivers and advocates to develop real-world, patient-centered solutions. • Lead the way in advancing evidence-based research that supports families and caregivers. Join us February 26, 2025: https://ow.ly/sR7G50UQcSx

Join us at the 6th Annual Methods Summit to explore a comprehensive approach to patient-centered value research. From defining value to real-time strategy adaptation, this event brings together leaders in HEOR, HTA, academia, and policy. When: Wednesday, March 19, 2025 Where: Venable LLP, 600 Massachusetts Ave NW, Washington, DC, 20001 In-Person with a live-stream option Learn more and register: On-Site Registration: https://ow.ly/sUoE50UGr3c Live-Stream Registration: https://ow.ly/xCuy50UGr3a Sponsoring the Methods Summit supports awareness and adoption of patient-centered research methodologies. Thank you, Alexion AstraZeneca Rare Disease and Pfizer for being champions of patient-centric healthcare! #HealthcareInnovation #HEOR #HTA #MethodsSummit #PatientCenteredResearch #HealthcareLeadership #ValueResearch #HealthEconomics #PolicyResearch #HealthTechnologyAssessment #ResearchCollaboration #HealthcareEvent #WashingtonDCEvents

Caregiving for an adult can be challenging, both financially and emotionally. Many caregivers face elevated rates of depression and anxiety and even see declines in their health. And the costs add up—caregivers often spend around a quarter of their income on out-of-pocket expenses. But for some, the price is even higher. Research has revealed a hidden segment of caregivers who risk their stability, sometimes leading to homelessness. Black men are an often-overlooked group shouldering this responsibility. While caregiving can be rewarding, it also comes with significant challenges. Read the full article to learn more about this important issue: https://ow.ly/j4Kr50UgKKe