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Privacy vs. Data Sharing

The efficiencies in service delivery from sharing data are obvious to states, but privacy and confidentiality concerns are just a few reasons not to share away.

Let’s say that you were working in a state, county or city with a homeless person who had bipolar disorder, type 2 diabetes and multiple incidents of hospitalization. Obviously, there’s a lot to be done for that person from a variety of agencies in order to provide housing, address mental health needs, deal with the chronic health condition and so on. Wouldn’t it be good if the various agencies and departments involved could easily share information about the client?

Consider the advantages for the person. For one thing, he or she would no longer have to repeat intimate information to a series of different case workers. When the agencies are all able to see the same information about the same patient, they can coordinate to build upon the care others are providing, instead of starting from scratch every time.

From a state’s point of view, the efficiencies in service delivery from sharing data are obvious. They would save time and money by re-using the same data instead of gathering and storing it over and over again. In addition, it would help the state avoid duplication of services. 

So, why not share away? One reason is concerns about privacy and confidentiality. 

Tracy Wareing, the Executive Director of the American Public Human Services Association, is dubious about this proposition. She says that many managers are challenging the presumption that confidentiality is an inescapable obstacle.  

“There is a lot of leeway under current law that allows for appropriate sharing of information. Many government employees have changed their focus from 'why is it we can’t share information?' to 'why is it that we can and should?'"

Wareing’s belief that privacy and confidentiality need not stand in the way of the efficiencies of data sharing have been borne out in Montgomery County, Md., a diverse community with a little over a million residents. In 1996, the county integrated all of its health and human services. But the merger didn’t automatically make data sharing possible. A variety of privacy-related federal and state laws seemed to stand in the way.

Solutions were possible thanks to cooperation from the Montgomery County attorney’s office.  “They told us, ‘you are our client,’” said Uma Ahluwalia, director of the county’s department of health and human services. “'We have to get you what you need,’ instead of saying ‘you can’t do what you want.’”

It took over a year for the county to figure out how to resolve the struggle between the agency’s needs and statutes. Four clear criteria were most important. If they are followed, the county determined data sharing was far easier:

1) The use of the data has to be for purposes of treatment. 

2) The use of data has to be limited to what is necessary for treatment at the time and nothing more.

3) Only specific people in an individual agency can access the data. 

4) No one involved should be asked to go outside his or her own rules of professional ethics.

With those principles in place, Montgomery County told the agencies in health and human services that if they didn’t want their information shared, they would have to opt out. “That’s an extra step they have to take,” said Ahluwalia. “And by doing it that way, the majority of people go along.”

This story was originally published by Governing