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

Our Story

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.

The Team

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.

Fastercures homepage

Taylor D. Cusher, MPH
Associate Director

Cynthia Grossman, PhD
Director, Science of Patient Input

Kim McCleary
Senior Advisor

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.

See Our Work

Bryson Wong
UX Designer

Jennifer Patel
Designer, Engineer

Juhan Sonin

Advisory Panel

Gregory Daniel, PhD
Deputy Director
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

Nikki Levy
Vice President, Patient Engagement

Erin Mackay
Associate Director, Health Information Technology Programs
National Partnership for Women & Families

Megan O’Boyle
Principal Investigator
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