A FasterCures PCORI-Funded Project

About

Data matters.

A patient-centered approach to demystify health data

A knowledge gap exists between what people understand about the R&D system and what the system is asking them to do. The average person feels that the health-care system collects an immense amount of information from them. So they wonder, what more does my care team need me to do? What are they doing with the data they already have?

To help bridge the gap, FasterCures is developing a tool to help people understand what makes up their health data, how they are collected and shared, and who uses them, so they have the basic knowledge needed to use these data when making decisions about their health. This project, “Education to Engage Patients: Health Data,” is funded through a $250,000 Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (#4202-MI). The work is led by our Patients Count program team that is building a science of patient input. We will draw on user-centered design principles and the expertise of Involution Studios and an advisory panel (see below) to keep participants’ educational needs as a focal point. Surveys, in-depth interviews and user testing with participants will inform the design and refinement of a tool that is brief, easily accessible to individuals and aligned with their educational needs. The form the tool takes – digital, web-based, paper, etc. – will be determined by the user-centered design approach.

 

Your voice has been heard

Thank you for responding to FasterCures' Health Data Basics survey. We received over 700 responses from patients and caregivers. Find survey and interview results here.

 

 
 

With the support of

 
 

 
 
 

Involution Studios

The user-centered design process will be guided by a team of consultants from Involution Studios. Involution’s design practice is dedicated to innovation in healthcare. Their team has a significant track record of creating software for patients, clinicians, researchers, and analysts over the past decade, and high rates of customer satisfaction and enthusiasm. Working with organizations focused on healthcare, they come with the right experience to help FasterCures execute this project.

 
 
 

 
 
 

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

Adrian F. Hernandez, MD
Director, Health Services and Outcomes Research
Faculty Associate Director
Professor of Medicine, Cardiology
Duke University School of Medicine

Nikki Levy
Vice President, Patient Engagement          
Alkermes

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