Engaging in Research during Emergencies

The COVID-19 pandemic has created an environment in which research initiatives have mobilized quickly to improve health outcomes and optimize health systems. However, the engagement of people with IDD in that research response is limited due to the significant barriers and increased risks they experience during public health emergencies. Thus, there is a pressing need for collaborative research on how to best support people with IDD and their caregivers during COVID-19.

Project Name:
Preparing Individuals with IDD for Engagement in Research During Public Health Emergencies and Disasters

Overall Goal:

To build capacity for community-engaged research with vulnerable populations during public health emergencies and disasters.

Objectives:

This project is guided by the following three aims:

  • Aim 1: In partnership with stakeholders, identify best practices for remote engagement, including the use of accessible information technologies to promote communication and collaboration despite distance or isolation for individuals with IDD, their caregivers/families, and community research partners.
  • Aim 2: Translate effective peer support strategies to uniquely offer guidance and assistance in the context of research partnerships, particularly during public health emergencies and disasters.
  • Aim 3: Develop accessible and relevant ways to prepare and maintain community partnerships for crisis response research through planning and training to “expect the unexpected.”

Our project embraces stakeholder engagement at all stages, primarily exemplified by the employment of individuals with IDD on the core project teams. An advisory board that includes advocates with IDD, caregivers of people with IDD, representatives from community-based organizations, and public health emergency researchers will collaborate with the Project Leads in the iterative design of all products.

Download our factsheet Preparing for Research During PHE Tools!

To see more about the Remote Inclusive Toolkit!

To see more about the Peer Support Toolkit!

This project is partially funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EAIN-00109).

Developed in collaboration with YELL Lab (Youth and Young Adult Empowerment, Leadership and Learning) at the University of Florida lead by Dr. Jessica Kramer.