Authentic Patient Engagement
Patient engagement, once described as the “blockbuster drug of the century,” is a critical component of value-based healthcare. It underscores the important shift towards patient-centered care that prioritize active involvement of patients in their healthcare journey. By putting patients at the center and collaborating with them to inform decision-making, we can improve health quality, health outcomes, and ultimately, lower costs.
The Center has adapted the following definition of patient engagement:
“The active, meaningful, and collaborative interaction between patients and researchers across all stages of the research process, where research decision-making is guided by patients’ contributions as partners, recognizing their specific experiences, values, and expertise.”
Learn More
For more information about this program, please contact the Center’s Director of Patient Engagement, Ushma Patel, at ushma.patel@thevalueinitiative.org.
Patient Engagement at the Center
The Center for Innovation & Value Research has a sustained history of prioritizing authentic patient-centricity as a core principle that guides and shapes our work. A key component to putting authentic patient-centricity into practice is partnering and engaging with patients throughout our convenings, programs, and research process.
Patients and Caregiver Partners
Collaborate with, inform, and direct research initiatives
- The Center’s research initiatives start with patient and caregiver partners as co-leaders early in research formation and throughout the research process and dissemination.
- The Center incorporates the patient voice on multi-stakeholder steering committees and on projects.
Share their stories, present, and collaborate
- Patients and caregiver partners are collaborators in the Center’s events, reports, thought leadership, and research.
We hope to learn from and collaborate with people with lived experience to ensure that our work stays true to our core principle of patient-centricity and sets a benchmark for the health technology assessment field on the authentic practice of patient engagement.
Call for Expertise
The Center for Innovation & Value Research is holding a call for expertise for advisory committees.
The 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 is vital in strengthening our patient engagement efforts. Click here for the Patient Advisory Council Application Form.
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. Click here for the Public Policy Council Application Form.
The Center is committed to ensuring representation from a diversity of perspectives and backgrounds to guide the Center towards achieving its mission.
patient advisory council
Anna Hyde is the Vice President of Advocacy and Access at the Arthritis Foundation. She oversees both the federal and state legislative programs, in addition to grassroots engagement. Her focus is to raise the visibility of arthritis as a public health priority, build support for federal and state legislation that ensure access to affordable, high-quality health care, and enhance patient engagement in the policy-making process. Anna previously served as Senior Director of Advocacy and Access, managing the federal affairs portfolio and overseeing the state advocacy team.
Prior to joining the Arthritis Foundation in 2014, Anna worked as Senior Manager for Federal Affairs at the American Congress of Obstetricians and Gynecologists, where she managed a portfolio of issues including appropriates, physician workforce, and health IT. She began her health policy career as a Congressional Fellow for Energy and Commerce Committee members, where she drafted legislation and staffed Committee activities. Anna received her BA in History from Southern Methodist University, and taught junior high and high school history before moving to Washington, D.C. in 2007 to pursue an MA in Political Science from American University.
A veteran leader in the rare disease patient focused drug development movement, Annie joined the EveryLife Foundation in 2018, where she’s led the Cost of Delayed Diagnosis: A Health Economic Study, the National Economic Burden of Rare Disease study, the development of the ICD Code Roadmap, and the community-driven Guide to Patient Involvement in Rare Disease Therapy Development. Annie previously held leadership roles at Parent Project Muscular Dystrophy (PPMD) and the Muscular Dystrophy Association (MDA) where she led landmark legislative, regulatory, newborn screening, transitions, and access policy efforts. She is a sought-after advisor to patient-centered organizations and initiatives across the nonprofit and government sectors. Annie’s community roles include service on the Board of Directors of Cure SMA, the Patient Driven Values in Healthcare Evaluation (PAVE) Steering Committee, the Patient Centered- Core Impact Set (PC-CIS) Steering Committee, the National Health Council’s PCORI Valuation Group, the Innovation and Value Initiative (IVI) Patient Advisory Committee, the National Duchenne Newborn Screening Pilot Steering Committee, the Institute for Gene Therapies (IGT) Patient Advocacy Advisory Council, a co-lead with IVI Engaging Patients with Rare Disease in Identifying Meaningful Approaches to CER and Value Assessment (PCORI award), and as a member of the NIH National Center for Advancing Translational Sciences (NCATS) Advisory Council and the Cures Accelerator Network (CAN) Advisory Board.
Kistein Monkhouse, a public health advocate and former frontline healthcare worker, is the founder of Patient Orator, a digital platform aiming to improve patient-provider communication and tackle health disparities. Her work extends to award-winning documentary production, including "Humanizing Health Care" and "The Cost of Abortion Bans." Beyond entrepreneurship, Monkhouse actively contributes to various not-for-profit boards, advocating for health equity and amplifying the patient voice.
Suz Schrandt is a patient and patient engagement engineer with a health and disability law and policy background. She is the Founder and CEO of ExPPect, a patient engagement initiative focused on improving healthcare and research through the expertise and partnership of skilled patient partners. Schrandt previously served as the Director of Patient Engagement at the Arthritis Foundation and as the Deputy Director of Patient Engagement for the Patient-Centered Outcomes Research Institute (PCORI); in both capacities she led the development and execution of patient engagement strategies to support research, medical product development, care delivery, and other innovation.
Before joining PCORI, Schrandt served as the Health Reform Team Leader for the Kansas Health Institute and she has held roles in bioethics, the study of genetic discrimination, and chronic disease self-management, as well as patient-led clinical training aimed at increasing early diagnosis and appropriate, patient-centered management of chronic disease. Schrandt’s passion for patient engagement began in large part from her own experience, having been diagnosed with polyarticular juvenile idiopathic arthritis as a teenager, several years before the first biologics were available. She has undergone multiple joint replacement and other orthopedic surgeries and has logged nearly thirty years of first-hand experience with the healthcare system.
Schrandt is one of nine voting members on the FDA’s inaugural Patient Engagement Advisory Committee. She has been the Chairperson for the International Society of Pharmacoeconomics and Outcomes Research (ISPOR) North American Patient Representative Roundtable since 2016, co-chaired the Patients as Partners conference from 2016 to 2018, and has been an invited speaker at numerous national and international conferences. Schrandt received her law degree from the University of Kansas School of Law and has co-authored multiple peer-reviewed articles on the value and importance of patient engagement.
Adam Thompson is an independent consultant supporting health systems, communities, and patients to improve health outcomes. He holds a bachelor’s degree in Theology from Georgetown University and will graduate in December of 2022 with his Masters in Public Health from the Jefferson College of Population Health where he was named the 2022 Public Health Student of the Year. He is currently the Co-Chair of the Primary Care and Chronic Disease Standing Committee for the National Quality Forum where he also serves on the Board of Directors. He is 2010 recipient of the Leadership in Quality Award from CQII and the HIV/AIDS Bureau. He co-developed several national trainings for Ryan White communities including the Training of Consumers on Quality, the Building Leaders of Color, and ELEVATE & ESCALATE programs. Mr. Thompson is the former Regional Partner Director for the South Jersey AIDS Education and Training Center and brings over 17 years of experience in health care improvement and patient engagement.
Diagnosed with non-radiographic Axial Spondyloarthropathy and various co-morbidities, Tiffany Westrich-Robertson has served as Chief Executive Officer since 2011. Under her leadership, she has spearheaded innovative, award winning projects, all based on patient-identified issues and patient-infused solutions.
In 2015, she led the Ethics of Step Therapy Investigation and authored the associated white paper, which concluded preferred drug recommendations are biased towards patients who meet general patient population standards. As a result, she advocates for legislation that considers individual needs, with focus on access to personalized and precision medicine, access, and value assessments. Additionally, she speaks regulatory to legislators about the importance of biomarker access in non-cancer groups and plans to toggle this work into the new AiArthritis Research Data Bank to gain information to further influence policy.
Tiffany is well-respected in the healthcare community, serving on several committees in both policy and research, including with the American College of Rheumatology, OMERACT (Outcome Measures in Rheumatology), Innovation Value Initiative (IVI), and the Institute for Clinical and Economic Review (ICER) Health Equity and methods revisit committee. Her previous roles included Vice President of Business Development & Project Management at a top architectural firm and college professor, with concentrations in advanced design, Business Development, and Project Management. She was nominated for Teacher of the Year in 2007 and the winner in 2008 as voted on by the student body. She also holds an advisory board seat on the Missouri State University Design Thinking program, helping other executives execute projects in a systematic, yet creatively innovative, manner.