On November 2nd, the Disability Community Engagement Partner Project (DCEPP) at AAHD launched our 2023-2024 Disability and Health Webinar series with “No Research About Us Without Us: The Promise of Disability Health Research.” Moderated by Dr. Charles Drum, this conversation brought together a panel of disability community members and advocates to discuss their vision of truly inclusive health research. Many thanks to our distinguished panelists who made this conversation possible. Learn more about Dr. Mark Harniss, Dr. Meg Ann Traci and Anthony Oberg in the section below, along with additional resources shared during the panel.
Learn more about the All of Us Research Program and how inclusive research might support better health for all: bit.ly/DisabilityHealth-Webinar-Nov2
Resources
- Dr. Meg Ann Traci’s PowerPoint Slides
- PowerPoint Slides from Dr. Mark Harniss
- Integrating Accessibility into Agency Diversity, Equity, Inclusion and Accessibility (DEIA) Implementation Plans
- The Belmont Report – Ethical Principles and Guidelines for the Protection of Human Subjects of Research.
- Disability inclusion in precision medicine research: a first national survey. Genetics in Medicine.
- Project Inclusive Genetics: Protecting reproductive autonomy from bias via prenatal patient-centered counseling. Human Genetics and Genomics Advances.
- In Different Voices: The Views of People with Disabilities about Return of Results from Precision Medicine Research. Public Health Genomics.
- Conducting Accessible Research: Including People With Disabilities in Public Health, Epidemiological, and Outcomes Studies. American Journal of Public Health
About our Panelists
Mark Harniss, PhD (he/him/his) is an Associate Professor in the Department of Rehabilitation Medicine at the University of Washington, director of the UW University Center of Excellence in Developmental Disability (UCEDD), director of the UW Center for Technology and Disability (CTD), and education director of the Center for Research and Education Accessible Technology and Experiences. He is past director of the UW Disability Studies Program. His research focuses on knowledge translation, assistive technology, and accessible design for people with disabilities. Dr. Harniss is PI of the NIDILRR-funded ADA Knowledge Translation Center and co-investigator on the NIDILRR-funded RRTC on Employment of People with Physical Disabilities and the OSEP-funded Rhonda Weiss Center for Accessible IDEA Data.
Dr. Meg Ann Traci (she/her/hers) is a psychologist with expertise in human development, disability and health, and life-span developmental theory. She is: a research professor at the University of Montana (UM) Rural Institute for Inclusive Communities and serves as chair of the UM Human and Family Development minor; her faculty affiliation is with the UM School of Public and Community Health Sciences. Dr. Traci is the Knowledge Broker on the Research and Training Center on Disability in Rural Communities and the senior consultant on the Montana Disability and Health Program– drawing on 30 years of experience in grant writing and a productive program of community-based research, development, and systems change. She has published numerous articles covering a range of topics including access to health care, systems advocacy, inclusive health promotion programs and healthy communities.
Anthony Oberg, MPA (he/him/his) is a Program Manager on the Bridging Sectors to Create Health Portfolio at the National Network of Public Health Institutes (NNPHI). He received his master’s degree in public administration from American University in 2015. As a person with a disability, his lived experience with Cerebral Palsy has influenced his professional life and approach to public health work. Prior to working at NNPHI, Anthony worked at AAHD as a program coordinator and disability advocate. Anthony began his career as a federal contractor in VA, where learned the importance of document accessibility and making sure information can reach as many audiences as possible. Using his lived experience alongside his project coordination expertise, Anthony hopes to increase awareness of disability as a public health issue.