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). The report highlights the critical need to improve data capture at the point of care and other data infrastructure improvements. 

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.

Since the beginning of the COVID-19 pandemic, public health staff have worked tirelessly to make sense of the extraordinary volumes of data coming at them at different times and in different ways. Because much of this information is unstructured or non-standardized, epidemiologists, scientists, and others must first bring these data into alignment before the real work can begin. The more differences there are in the data, the more painstaking the is work for people on the frontlines trying to put the pieces together fast.

When talking about artificial intelligence (AI) today, people are usually referring to predictive models—often driven by machine learning (ML) techniques—that “learn” from historic data and make predictions, recommendations, or classifications (outputs) which inform or drive decision making. The power of ML is in its enormous flexibility. You can build a model to predict or recommend just about anything, and we have seen it transform many sectors.

The Office of the National Coordinator is launching a new blog series featuring ONC staff called Inside ONC. Inside ONC will highlight an inclusive landscape of ONC staff members, a variety of positions, and the diverse backgrounds of those working within ONC.