Center for Innovation & Value Research

Ushma Patel, Director of Patient Engagement at the Center for Innovation & Value Research, shares her personal experience navigating the economic and emotional impacts of her daughter’s rare disease. She highlights the often-overlooked financial burdens families face beyond direct medical costs and discusses how the Center’s Patient-Centered Economic Impacts Project seeks to address these challenges in healthcare research and decision-making. Read Ushma's Caregiver Story: https://ow.ly/v8C950TNv8P #PatientEngagement #HealthcareResearch #RareDiseaseAwareness #HealthEquity #PatientCenteredCare #EconomicImpact #HealthcareInnovation #FamilyHealth

The Center for Innovation & Value Research is holding a call for expertise for advisory committees. Patient Advisory Council brings essential patient insights to shape the Center's strategy and ensure our work is patient-centered, transparent, and equitable. Comprised of patients, caregivers, and advocates with firsthand healthcare experience, the council plays a vital role in strengthening our patient engagement efforts. https://ow.ly/fCW150U39aP The Public Policy Council guides our policy strategy, applying research findings to shape objectives, activities, and priorities. Comprised of policy experts, researchers, analysts, and advocates from diverse backgrounds—including healthcare purchasing, payment, and public agencies—they are instrumental in advancing our mission. https://ow.ly/4lx050U39aT The Center is committed to ensuring representation from a diversity of perspectives and backgrounds to guide the Center towards achieving its mission and vision. Ushma Patel Mark Linthicum ? #PublicPolicy #HealthcareStrategy #Research #PatientCentered #HealthcareAdvocacy #PatientEngagement

The Center for Innovation & Value Research invites you to our second virtual workshop in the Patient-Centered Economic Impacts Project, “Time is Money: Capturing Time Effects of Economic Impacts,” on November 14, 2024. This workshop will explore how time costs, such as delayed treatments, lost income, and missed educational opportunities, affect patients and caregivers. Event Details: November 14, 2024 | 1:00–3:00 PM ET | Virtual Register now to be part of this critical conversation on how to make healthcare research more patient-centered. https://ow.ly/UGG950TNuNp Read the first learning Workshop report “Patient Journey Mapping to Inform Economic Impacts.” to learn more about the workshop's insights and the path toward more patient-centered research practices. https://ow.ly/AnaZ50TNuNs Tina Aswani-Omprakash, MPH, President & Co-Founder of the South Asian IBD Alliance Beth Gore, CEO of the Oley Foundation Casey Quinn, PhD, Senior Advisor for Patient-Centered Economic Outcomes, Patient-Centered Outcomes Research Institute (PCORI) #HealthcareResearch #PatientCentricity #EconomicImpacts #PatientExperience #HealthEconomics #HealthcareCosts #ResearchInnovation

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://lnkd.in/dRWehGPv

Richard Chapman, the Center's Chief Science Officer, will be attending the Pharmacy Quality Alliance conference on November 7 in Arlington, VA. Rick will join leaders in the rare disease community to discuss enhancing quality in medication use. This event brings together patients, caregivers, specialty pharmacies, biopharma industry leaders, and payers to explore what quality truly means in healthcare and ways to improve it. Learn more and register here:?https://lnkd.in/e5gsJVJU #HealthcareQuality #RareDisease #MedicationQuality #PQAMeeting #CenterForInnovationAndValue

SPECIAL ELECTION: Call for Nominations The Center is seeking Patient and Caregiver Expertise for our Board of Directors. Positions Available: Two (2) volunteer positions Commitment: 3-year term starting January 1, 2025 Deadline: Submit nominations by November 8 Who We're Looking For: Individuals with lived healthcare experience (patients, family members, caregivers) Patient advocacy professionals passionate about representing and advocating for patients Submit your nomination: https://ow.ly/TlJA50TStRB Job Description: https://ow.ly/XcJt50TStRE hashtag #PatientAdvocacy hashtag #CaregiverSupport hashtag #HealthcareLeadership hashtag #LivedExperience hashtag #HealthcareInnovation hashtag #boardofdirectors

November is National Family Caregivers Month, and this month, we honor the 53 million Americans who selflessly provide care to their loved ones. Family caregivers are the backbone of our healthcare system, often sacrificing their well-being to support others.?? ? Did you know the economic value of family caregiving is estimated at $600 billion annually?? ? To learn more about caregiver resources, visit the Family Caregiver Alliance / National Center on Caregiving: https://www.caregiver.org? #CaregiverAwareness #ValueOfCare #PatientEngagement #NationalFamilyCaregiversMonth?

The Center's Research Manager, Michelle (Yuan-Yuan) Cheng recently attended the CEA Symposium, hosted by the Center for the Evaluation of Value and Risk in Health (CEVR), and the SMDM Annual Meeting by the SOCIETY FOR MEDICAL DECISION MAKING INC. The Center for Innovation & Value Research is proud to have representation at such impactful events as we look toward the future of healthcare decision-making! #CEA #SMDM #HealthEconomics #AI #AIinHealthcare

SPECIAL ELECTION: Call for Nominations The Center is seeking Patient and Caregiver Expertise for our Board of Directors. Positions Available: Two (2) volunteer positions Commitment: 3-year term starting January 1, 2025 Deadline: Submit nominations by November 8 Who We're Looking For: Individuals with lived healthcare experience (patients, family members, caregivers) Patient advocacy professionals passionate about representing and advocating for patients Submit your nomination: https://ow.ly/TlJA50TStRB Job Description: https://ow.ly/XcJt50TStRE #PatientAdvocacy #CaregiverSupport #HealthcareLeadership #LivedExperience #HealthcareInnovation #boardofdirectors

The Center for Innovation & Value Research is excited to announce the release of our new learning report, “Patient Journey Mapping to Inform Economic Impacts.” Based on the first of six workshops in the Patient-Centered Impacts Project, this report explores how patient journey mapping can illuminate the broad spectrum of economic challenges faced by patients and caregivers. By integrating patient perspectives into research, we can better understand the true costs of healthcare, moving beyond just medical expenses to uncover hidden burdens. This report is essential reading for researchers, funders, and patient communities aiming to enhance their approach to healthcare economics. Thank you to the first workshop's faculty, @Elisabeth Oehrlein, PhD, MS and Jae Samuel! Read the full report to learn more about the workshop's insights and the path toward more patient-centered research practices. https://lnkd.in/eUQfei_z Register for our second virtual workshop in the Patient-Centered Economic Impacts Project, “Time is Money: Capturing Time Effects of Economic Impacts,” on November 14, 2024. https://lnkd.in/e3TK86sn #HealthcareResearch #PatientCentricity #EconomicImpacts #PatientExperience #HealthEconomics #HealthcareCosts #ResearchInnovation