Research Team Sarah H. Ailey Principal Investigator Rush CON Molly Bathje Co-Investigator Rush CHS Tamar Heller Co-Investigator University of Illinois Award Period 6/1/16 – 5/31/17 Funding Source Agency for Healthcare Research and Quality (AHRQ) R13 Conference grant
On March 23 and 24, 2017, leaders on disability rights and disability health care from around the country gathered at Rush University for the Partnering to Transform Healthcare with People with Disabilities (PATH-PWD) conference sponsored by Rush University and the Rehabilitation Research and Training Center on Developmental Disabilities and Health, University of Illinois at Chicago. The conference was funded by grants from the Agency for Healthcare Research and Quality (AHRQ) and the Special Hope Foundation.
Due to barriers to equitable healthcare, people with disabilities receive, primary, acute, and transitional health care services at lower rates and with poorer outcomes than the non-disabled population, leading to increased costs, decreased quality of life and increased morbidity and mortality for individuals with disabilities. The PATH-PWD conference brought together advocates from across disability communities with healthcare stakeholders to recommend research and training agendas, and to collaborate on best practices and innovations in health care for people with disabilities.
Over 130 people attended the conference, which included a keynote presentation by Dr. Lisa Iezzoni, panel presentations, small group work sessions, and two cultural events.
Small group work sessions on March 24 focused on both Best Practices and Research and Training Agendas in acute care, primary care, transitions, and health promotion. The outcome of the group work included identifying priorities and action plans to address the priorities. Below is a summary of the themes that evolved through the small group sessions:
- Involve people with disabilities in all aspects of health promotion and health care including person-centered care, supported decision-making, peer navigation, program development, participatory research and monitoring of service quality (“nothing without us”).
- Develop, implement and disseminate training for health professionals, providers, people with disabilities and their families in health care needs, rights, and best practices including developing a repository of training available.
- Increase access to quality health care and health promotion, including promoting integrated models of care, payment structure reform, representation of people with disabilities in the workforce, health literacy, universal design, and cultural competency.
- Develop, research, and scale up evidence based programs that result in positive health outcomes for people with disabilities.
- Identify and develop valid, reliable, practical and sensitive instruments to measure outcomes relevant to persons, systems, and providers.
- Improve communication, planning, and support in transitions from emergency services, discharge from acute care, transitions from one setting to another, and to life course transitions through end of life care.
- Identify and analyze data sources to better understand definitions of disability, service needs and use, social determinants of health and healthcare disparities, health care experiences, and health outcomes of people with disabilities.
Many conference participants also set goals specific to addressing priority issues within the small group breakout sessions. Other outcomes of the conference include publishing white papers and policy briefs.