Background: Patients with disabilities experience disparities in the receipt of high-quality healthcare services. These disparities can result when discriminatory attitudes, inaccessible physical environments, and a lack of appropriate accommodations exist. Section 1557 of the Affordable Care Act prohibits healthcare organizations (HCOs) from discriminating against patients with disabilities and mandates HCOs with 15 or more employees designate an employee to coordinate compliance efforts. As a result, HCOs are hiring disability accessibility coordinators (DACs).
Proposed Solution to the Problem: The project team proposes developing the Learning Collaborative to Address Disability Equity in Healthcare (LEADERs), a sustainable learning collaborative of DACs, patients with disabilities and their caregivers, and researchers across the United States who will work together to engage in the development, conduct, and dissemination of patient-centered outcomes research (PCOR) that aims to ensure equitable care to patients with disabilities.
Objectives: The long-term goal is to develop and implement LEADERs, a sustainable learning collaborative. To achieve this, the project team will:
Develop a national advisory committee of key stakeholders to develop and implement LEADERs
Engage key stakeholders to understand their priorities for PCOR to address disability healthcare disparities
Develop a sustainable infrastructure for engaging and disseminating research findings to the LEADERs
The team will establish an advisory committee that will consist of patients with disabilities and their caregivers, researchers, and DACs. The advisory committee will assist in developing methods and standards for engaging, connecting, and training members of the learning collaborative.
The researchers will conduct qualitative interviews with key stakeholders and a modified Delphi panel with the advisory committee with the goal of understanding their research priorities.
The project team will engage its advisory committee and LEADERs members in developing a website or web-based collaborative network that will connect participants and host research findings and other resources for DACs.
Outcomes and Outputs:
An active and sustainable learning collaborative
A consolidated list of stakeholders’ priorities for PCOR to address equitable care for patients with disabilities
An online platform that will include the identified priorities; resources for conducting PCOR to address disability healthcare disparities; resources and evidence for providing equitable care to patients with disabilities; and an option for stakeholders to connect.
Patient and Stakeholder Engagement Plan: The team will have three stakeholder groups: patients with disabilities and their caregivers, researchers, and DACs. All three groups will be represented in the advisory committee and LEADERs, and will be integral to the planning and execution of the proposed project. The advisory committee will meet a total of six times and will be primarily engaged with planning and guiding the project. LEADERs will meet every other month during the project.
Project Collaborators: The project will be conducted at the Adult and Child Consortium for Health Outcomes Research and Delivery Science (ACCORDS) at the University of Colorado Denver. Members of the advisory committee represent diverse hospitals, universities, and patient advocacy organizations across the country, including Partnership to Improve Patient Care (PIPC).
The COVID‐19 pandemic has exacerbated the inequities in care delivered to patients with disabilities, which has consequently raised the awareness of the legal and ethical requirements of healthcare organizations to provide equitable health care to patients with disabilities. The goals of the enhancement are to:
Identify COVID‐19-related disability healthcare disparities research priorities.
Expand our established national learning collaborative of healthcare organizations who are striving towards providing disability equitable care and are equipped to participate in patient-centered outcomes research to address disability healthcare disparities.
Develop and implement a national dissemination plan for the LEADERs learning collaborative and the associated online platform.