A Patient Centered Approach to Demystify Health Data
FasterCures and GoInvo developed tools to explain health data and how it’s collected, shared, and used to make decisions about health
A knowledge gap exists between what people understand about the medical R&D system and what the system is asking them to do. According to research, most people understand the health care system collects an immense amount of their information. Many may ask, “where’s my data going?
To bridge the gap, FasterCures and GoInvo have developed a set of tools to help people understand what makes up their health data, how the information is collected and shared, and how it is used. This important work pushes forward individual and community understanding of how data can support patients, caregivers, and providers making decisions about health.
Originally, this project was funded through a $250,000 Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (#4202-MI). The award allowed FasterCures and GoInvo to create tools that are brief, easily accessible to individuals, and aligned with their educational needs. Surveys, in-depth interviews, and user-testing with participants informed all created resources.
Now, FasterCures is making continued efforts to partner with patients and organizations alike to utilize these tools and help make health data more accessible for every individual.
FasterCures, a Washington, D.C.-based Center of the Milken Institute, is driven by a singular goal – to save lives by speeding up and improving the medical research system. For too long, patients’ unmet medical needs have been an afterthought, rather than a starting point, for developing medical products that address their priorities and deliver value to the health-care system.
Taylor D. Cusher, MPH
Cynthia Grossman, PhD
Director, Science of Patient Input
GoInvo’s design practice is dedicated to user centered innovation in healthcare. Their team has a significant track record in software for patients, clinicians, researchers, and analysts over the past decade, and high rates of customer satisfaction and enthusiasm.
Gregory Daniel, PhD
Duke-Robert J. Margolis, MD Center for Health Policy
Tracy Dixon-Salazar, PhD
Director of Research and Strategy, Lennox-Gastaut Syndrome Foundation
Founder, Innovatients, LLC
Vice President, Patient Engagement
Associate Director, Health Information Technology Programs
National Partnership for Women & Families
Phelan-McDermid Syndrome International Registry and PMS Data Network, PCORnet PPRN
Joseph S. Ross, MD
Associate Professor of Medicine, Institute for Social and Policy Studies
Assistant Professor of Public Health (Health Policy)
Yale School of Medicine
Adrian F. Hernandez, MD
Director, Health Services and Outcomes Research
Faculty Associate Director
Professor of Medicine, Cardiology
Duke University School of Medicine