Searchable database of patient records to go commercial

A plan to make a system developed at the Cleveland Clinic available to other health entities has raised questions about the adequacy of privacy protections.

By — Posted Nov. 30, 2009

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The Cleveland Clinic is backing a startup company that has built a search engine for electronic databases that would allow research using de-identified patient data.

A newly formed company called Explorys is commercializing the patient database search system Cleveland Clinic developed. According to Stephen McHale, chief executive officer and co-founder of Explorys, health care organizations that sign on as partners will pay an annual subscription fee and have the option of sharing their data with the rest of the network, and making use of data others choose to share.

They can also use the search capabilities to sort through their own data to identify cohorts for clinical trials.

The idea is to provide a place for researchers to access more data in a much quicker fashion. McHale's co-founder Charlie Lougheed, who will serve as president and chief technology officer, said what has been lacking for researchers is the ability to access data in real time. Because there is no lag between the input of electronic data and access to it, he said, a dialogue can be created between researchers and clinicians that could result in more immediate improvements to quality of care.

As of now, pharmaceutical companies are the only entities outside of health care organizations the company is considering bringing in as paid partners. McHale said bringing them in would help facilitate collaboration between pharmaceutical researchers and clinicians.

The company might eventually allow insurers to sign on as partners for purposes of comparative effectiveness research, if there is enough of a demand, he said. "We want to improve health care, for sure, and the overall economics of it. So, of course, this tool is extremely powerful for understanding the aspects of comparative effectiveness and overall improving the delivery of health care."

The Cleveland Clinic has provided some financial backing for the company and will earn royalties under a licensing agreement. Explorys expects to be up and running with partners outside of Cleveland Clinic sometime in 2010.

Both McHale and Lougheed say their extensive experience in data privacy and intrusion protection is one of their strongest assets. But at least one group wants proof of how data will be protected before it lends its support to Explorys.

"There's just so little detail about this that I think it's hard for those of us who care about the privacy issue to be universally excited based on someone's reassurances that everything's OK," said Deven McGraw, director of the health privacy project at the Center for Democracy and Technology.

She said she wasn't aware of any details about the company or the project outside of news releases and media reports. "I think the public is owed some detail."

Whatever nonproprietary information they can release that explains how they will protect patient data will be an important aspect of their business model, McGraw said.

She is also concerned with the standards of de-identifying data, which were developed five years ago and need to be strengthened, she said. "It's a little outdated given just how much progress has been made in making data more publicly available so that it can then be linked up so that a database that was once de-identified is now not so de-identified anymore," McGraw said.

"If they are right and they have privacy locked down and they've got it tied up neatly with a bow, no one's getting through, it's all appropriate uses of the data only, then I would be the first one standing up to applaud them and applaud their use of technology to advance health care."

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