Duke Clinical Research Institute (DCRI), in collaboration with data analytics firm SAS, released 45 years of cardiovascular patient records for secondary analysis.

In addition to boosting research in the field of cardiovascular research, the initiative hopes that the release serves as an example for how academia could make similar stores of data available for research.

Currently, there is not a lot of data with the ability to answer long-term solutions available to researchers, says Eric Peterson, MD, executive director of the Duke Clinical Research Institute. He says he wants DCRI to be a “role model for other institutions to do the same.”

The cardiovascular dataset is part of the Duke Databank for Cardiovascular Disease (DDCD), which includes de-identified records for patients treated at Duke between 1969 and 2013, including data from more than 100,000 procedures on more than 50,000 unique patients. The data includes patient demographics, cardiac medical history, comorbid conditions, final impressions and subsequent treatments.

Matt Gross, director of the SAS Health Care and Life Sciences Global Practice, says Duke Clinical Research Institute is the first outside the pharmaceutical realm to share data with the “dirtiness of the real world” at this level. He explains that the data shows patient history and how they responded to certain surgeries or medicine, making it broader than “sterile” clinical trial data that only represents a subset of the population that has already been included and excluded for a specific purpose.

“It’s valuable because it provides a different perspective,” he says. ‘You see how healthcare interacts with the real world.”

Heart disease is the leading cause of death in the United States, killing 1 of every 4 people, according to the Centers for Disease Control and Prevention. Nearly half of sudden cardiac deaths occur outside a hospital, which suggests Americans do not act on early warning signs of heart disease.

Data from this longitudinal study can expand on those statistics to better enable clinicians to better treat patients with heart disease.

The release of this data also represents a shift in the industry to become more transparent, but it has not fully reached academic centers. “Mandates have progressively pushed the issue,” Peterson says, “but academic centers have not been hit with those mandates.”

Instead, academic centers have been characterized as data hoarders, a stereotype that DCRI is trying to change through its contribution of data to the databank. “This type of data was locked away,” Gross says. “And often times, literally it was just stored, whether it’s real cardboard boxes or virtual files somewhere.”

Researchers will be able to access 45 years of data to test clinical hypotheses, develop clinical trial protocols and help researchers assess long-term outcomes and assess time trends.

There are challenges, however. “There is no set data standard,” Peterson says. “Many of these can’t be mapped over.”

DCRI and SAS are also constructing a data governance plan to ensure the reliability of the datasets and to process requests as efficiently as possible. The data, Peterson adds, will be protected behind SAS’ firewalls. Researchers will “take away aggregated results, not data,” he says. DCRI is also working with search engine technology and early developers on the databank.

Then there’s the worry that this data would still be “relatively unused,” similar to some data sharing within pharmaceuticals. Peterson remains optimistic for “the number of great discoveries that can come out of it.”

(This article appears courtesy of our sister publication, Health Data Management)

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