NSHD Data Use and Requests
DATA CONFIDENTIALITY
Survey respondents do not have to answer any survey questions that they do not want to answer. The responses they provide to the survey questions will not be identified with their name; researchers will use a number to identify respondents. The survey will ask for their state, county, zip code and month and year of birth, but these indirect identifiers are for research purposes only and will not be used to identify individual participants. Data collected from the survey will also be aggregated. This means individual responses on the survey and those of others will be grouped together so no individual can be identified. Survey responses will be assigned a random, unique identifier and this de-identified information could be used for future research studies or distributed to another investigator for future research studies without additional informed consent from the participant.
The National Survey on Health and Disability is also covered by a Certificate of Confidentiality from the National Institutes of Health (NIH). This means that the researchers cannot release or use any information that may identify participants unless they give consent. This protection includes federal, state, or local civil, criminal, administrative, legislative, or other proceedings. The Certificate of Confidentiality does not stop participants from willingly releasing information about their involvement in this research.
For more information about the NIH Certificate of Confidentiality see: https://grants.nih.gov/policy/humansubjects/coc.htm
DATA USE AND AVAILABILITY
Data from all waves of the survey are currently being analyzed by a multidisciplinary team of researchers from 35+ different institutions (the NSHD Data Analyses Team). These researchers obtained an NSHD limited data set (LDS) from KU-IHDPS and are conducting analyses on a variety of topics. The richness of the dataset lends itself to many varied analyses related to the impact of health policies and insurance coverage on the health, quality of life and community participation of people with disabilities, as well as social determinants of health for this population.
The NSHD data is available to other researchers at no cost by contacting Noelle Kurth (pixie@ku.edu) and completing a brief data use agreement. Participation on the NSHD Data Analysis Team is encouraged by all who request NSHD data.
Findings from the NSHD have been and continue to be presented at national conferences (e.g. NARRTC, AcademyHealth, APHA, AUCD). Peer-reviewed journal articles continue to be submitted and published by researchers on the NSHD Data Analysis Team. Topics included in these publications and presentations to date include: intersectionality and compounded health disparities for people with disabilities who identify as LGBTQ+; Health Insurance Motivated Disability Enrollment (HIMDE); the impact of Medicaid expansion; trends in community participation, employment and social isolation in rural areas; profiles of use of paid and unpaid personal assistance services; inadequate provider networks and unmet health care needs among people with disabilities; disparities between adults with autism spectrum disorder in access to care and unmet health care needs; health insurance stability and its impact on care for people with disabilities. The analysis team's activities and access to the NSHD datasets will continue through 2027.
For more information about the NSHD, analyses using it and obtaining a limited data set, please contact Noelle Kurth (pixie@ku.edu, 785-864-7085).