July 26, 2022, marked the 32nd anniversary of the Americans with Disabilities Act (ADA). In celebration of this landmark civil rights law, the Office of the Assistant Secretary for Planning and Evaluation (ASPE) published a report called Improving Data Infrastructure for Patient-Centered Outcomes Research for People with Intellectual and Developmental Disabilities (IDD).
In 2017, there were 7.4 million individuals with IDD in the United States. Individuals with IDD often receive care in both traditional health care settings like hospitals,

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Real world health data are critical for Patient-Centered Outcomes Research (PCOR). However, it’s often difficult, expensive, and time consuming for researchers to access real-world clinical health data because of privacy concerns, security restrictions, and usage issues. Although PCOR researchers, health information technology developers, and informaticists often depend on anonymized or de-identified clinical health data for testing theories, data models, algorithms, and prototype innovations, re-identification of anonymized data remains a possible security risk. Synthetic health data can provide a no-risk data source to complement research and support testing needs until real clinical health data are available.

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