The Intellectual Disability Health Data Portal uses data from a linkage program held by the Department of Developmental Disability Neuropsychiatry.
The linkage program includes a cohort of people with intellectual disability from New South Wales whose data is used to explore health and mental health profiles, mortality, pattern of health service use and associated costs between 2001 and 2015.
The cohort is drawn from a number of data sets including: the Disability Services Minimum Data Set; Admitted Patients Data Collection; Emergency Department Data Collection, NSW Mental Health Ambulatory Dataset, targeted specialised program in NSW public schools, NSW Ombudsman, and NSW Public Guardian.
Further details on the cohort can be found here:
https://bmjopen.bmj.com/content/7/4/e015627
To prepare the data for the Portal, we aggregated results from the analyses conducted: i) by LHD/SHN, ii) by rurality, iii) for all people with intellectual disability in our linkage program, and iv) publicly available data on the general population in NSW. We then ran the analyses to look at demographics, health, health service use and associated costs of people with intellectual disability.
For results with cell sizes of less than five, we have masked the number to protect participants anonymity. Masking was completed by replacing the original number with a randomly generated number between 1-4.
The data presented in the Portal and the associated evaluation has received ethics approval (HREC/13/CIPHS/7, sub-study 2019UMB0906)