Suppose a faculty member wants to know how The Johns Hopkins Hospital stacks up against national averages on diabetes treatment costs and patient satisfaction.
Until recently, the analysis would require tapping one person for permission to access patient satisfaction scores, another to procure data about costs and a third to collect information about national averages. Johns Hopkins Medicine had no formal procedures for requesting information or ensuring it remained secure.
The Data Trust Council, established in 2013, has taken on the important task of creating systems and policies to ensure Johns Hopkins Medicine data are both useful and safe.
Ten analytics teams, with 140 people total, coordinate the flow of data between categories, including ambulatory quality, hospital operations and research. Working together, the teams “assure we are a data-driven organization with well-coordinated analytic efforts,” says Valerie Smothers, Data Trust coordinator for Johns Hopkins Medicine.
As part of that effort, the council created a single portal and process for data requests. The portal routes applications to the appropriate data stewards, keeps track of where the information goes and sets standards for safe storage. In addition, researchers seeking Institutional Review Board (IRB) approval for investigations using Johns Hopkins Medicine data must outline their data use and storage plans in an application reviewed by both the IRB and, under certain conditions, the Data Trust Council.
“If someone is doing something that’s not a best practice, such as storing sensitive information on a mobile device, we ask them to work with our information technology specialists to ensure that they’re using adequate security,” says Smothers.
One major catalyst for creating the council was the rollout of the Epic electronic medical record system, which integrates patient health data for more than 5 million patients at five Johns Hopkins hospitals. But even Epic contains just a fraction of potentially useful information, says Peter Greene, chief medical information officer for Johns Hopkins Medicine and a leader of the Data Trust Council.
“We’re anticipating a future of massive data feeds coming to us in novel ways, including a wide range of physiologic sensors and wearable devices,” he says. “It creates wonderful opportunities to better understand the patients. But it also creates real data management and governance challenges.”
Looking ahead, the council plans to engineer more robust ways of capturing and tagging data elements using internationally accepted formats, says Christopher Chute, chief health research information officer for Johns Hopkins Medicine. This makes the data “comparable and consistent,” he says, so it is easier to combine information from a variety of sources.
“We want to make sure the right people have the right access to the information they need,” says Greene. “With the Data Trust Council, we are bringing together pieces of things that many people have been doing for years and ensuring they are coordinated.”