Engaging Broad Patient Populations in Research

One Brave Idea   →  Approach   →  Engaging Broad Patient Populations in Research

Approach Overview

While we have learned a great deal from traditional research cohorts—studies that focus on the same group of patients annually, over many years—a theme that runs through One Brave Idea is an effort to change the culture around CHD research, breaking down the barriers that traditionally separate patient care, research, and the lives of individuals and families. These efforts include:

  • Incorporating new measurements (phenotypes)—such as remote wearable sensors—that can be used away from doctors’ offices and hospitals, as individuals are leading their daily lives.
  • In addition to engaging with individuals, One Brave Idea will also engage families in its research studies as they are encountered in the course of their clinical care. Family-based studies have traditionally been challenging to execute but offer several advantages that include: the prospect of more insights into the study of maternal and childhood contributions to CHD; additional analytic power gained by detailing family structure and history; longitudinal study involvement; and incorporation of the idea of research participation into family members’ lives over time.
  • Developing an agile and scalable approach to recruit individuals and families across the country and eventually the globe, so that they can participate fully in One Brave Idea science regardless of geographic location. This will be critical for quickly validating initial discoveries in broader groups of people.
Approach