Maryland’s health information exchange is taking new but cautious steps to make patient data more accessible to researchers.
Although leaders of the Chesapeake Regional Information System for our Patients (CRISP) say the HIE’s primary focus is improving clinical care, the organization has recently implemented new processes to make patient data accessible to researchers, according to Healthcare Informatics.
A CRISP subcommittee has begun identifying approved uses for specific research initiatives. So far, the organization has just one approved use case, which requires patient consent for their information to be used in a research study. Ross Martin, M.D., program director for research and transformation at CRISP, told Healthcare Informatics there is a broader opportunity to provide de-identified data, but the organization is intent on taking “very incremental baby steps.”
Policy decisions surrounding auto-query and patient consent create significant implications for data sharing. Although the number of public HIEs have been declining over the last several years, leading hospitals to invest in privately-run exchanges, more states are looking to take advantage of federal funding that helps ease the burden of administrative costs.
Martin added that CRISP is not designed to be a research data repository, but he recognized the potential value in the data that has been collected so far, which could save researchers time and money.
“We are not designed to be a data lake of the sort that most researchers would use,” he said. “We haven’t set up our data infrastructure to accumulate vast quantities of data, to be able to share and look at in aggregate. We show people data on a patient. We are set up technically to be more like pipes than a repository. It is not a trivial thing for us to serve up a big set of data. And frankly we are very busy with our prime directive of supporting clinical care.”