Fact Check: DODD Agreed to Send Your Data to InterRAI to Be Used in Research

On September 29, 2026, DODD held a webinar about the new interRAI assessment.

During the webinar, DODD Deputy Director Allan Showalter was asked if people with developmental disabilities can say no to having their personal data used for research.

He said: “Having de-identified data shared is not participating in research, so there’s not the ability to opt out for that.”

The family caregiver asking the question immediately pointed out that almost all research is de-identified.

Showalter then added: “Research regularly involves information where people do not have de-identified information, and certainly having de-identified information shared is not research.”

But DODD’s contract with interRAI says something different. The contract says DODD will send interRAI de-identified data to be used for research. “De-identified” means that information like a person’s name is removed.

The contract says: “These deidentified data sets will be used by interRAI solely for research purposes and to develop standards.”

The contract also says interRAI can “evaluate and publish data and research findings.”

So this is the important part: Removing someone’s name from their highly personal data (including mental competency, toileting, and other topics) does not mean the data are not being used for research. DODD signed a contract that clearly states that developmentally disabled Ohioans' data will be used for research.

This matters because Ohio law gives people with developmental disabilities the right to refuse to participate in “medical, psychological, or other research or experiments.”

DODD should explain why disabled people's data must be sent to interRAI to be used for research with no ability to refuse. The answer that this "is not research" does not make sense.