Professor Latanya Sweeney of Carnegie Mellon University spoke about the trustworthy designs for the Nationwide Health Information Network last Friday. Sweeney encouraged the audience to harness “the power of running the world that [they] really have.”
Latanya Sweeney of Carnegie Mellon University
The Nationwide Health Information Network (NHIN) would consist of a large database of patient medical records that could be exchanged, accessed, and updated by authorized individuals across the country.
“Relevant medical information should flow seamlessly across computer devices, organizations, and locations as needed,” said Sweeney. The NHIN facilitates this sharing of information.
Although a relatively streamlined network for medical billing/claim filing exists, a nationwide network for clinical data is still being pursued. The Office of the National Coordinator for Health Information Technology (ONC) is heading the effort efforts to develop the NHIN. However, efforts thus far have been relatively decentralized.
ONC has “let 1,000 weeds fester,” said Sweeney. A centralized model has yet to emerge among competing designs with their own interests.
In 2008, a system called CONNECT was trialed, but Sweeney pointed out this system had a few major shortcomings. For instance, CONNECT makes it possible for malicious stalkers to potentially access patient records.
Sweeney explained her current work. The project consists of evaluating six potential NINH models using five major criteria that she referred to as “trust issues.” These trust issues are
- deduplication and identity – ensuring that each patient only appears once in the network
- testing and liability – eliminating the lack of trust between different institutes, regarding test and lab results
- care and safety – ensuring that all patient records are complete and accurate
- data segmentation – ability of patients to completely limit the disclosure of certain information in their records
- corrections – ensuring that corrections made to medical records will be accurately displayed for all authorized viewers.
“Each of the six evaluated models will inevitably have its weaknesses with respect to the five criteria,” said Sweeney. The point, however, is to be able to “choose your battles wisely” when it comes to establishing the NHIN, rather than taking the “sum of all the weeds.”
“We don’t make any decisions,” said Sweeney. “Our job is to inform and educate.”