Researchers face delays awaiting data
British Columbia has personal health databases that are the envy of researchers worldwide, yet researchers here face obstacles and long delays in accessing that information to help cure diseases and deliver better patient care.
That was the message from Dr. Bruce Carleton, director, pharmaceutical outcomes at B. C. Children’s Hospital and chairman of the Provincial Data Stewardship committee, who told participants at Vancouver’s The Data Effect conference Tuesday that he would like to see goals set to shorten the response time to researchers’ requests for data.
Carleton said non- record level requests for data — information that isn’t linked to individual health records — should have a response time of two weeks, while deeper analysis for information that has to be anonymized to protect the privacy of individuals should be cut to 30 days.
The reality is far from those goals, Carleton said, with delays so long in some cases that he suggested those targets are too lofty.
“Maybe we should aim for 90 days,” he said. “A rapid- response mechanism like this is absolutely essential not just for research — this is essential for health planning.”
The conference brought together public and private sector health researchers, privacy experts, information technology leaders and other stakeholders in a daylong dialogue over making use of the vast amount of personal health information in digital databases.
A key issue is balancing privacy concerns with improving access to data, goals that British Columbia’s Privacy Commissioner Elizabeth Denham said are not mutually exclusive. While privacy measures are often the scapegoat in the debate over data access, Denham told conference participants the issue is more complex.
“In my view, privacy is not the elephant in the room, it is not a roadblock or a barrier to research that is in the public interest,” Denham told the conference. “Research can be accomplished in a way that is sensitive to privacy and security.
“The end game is research and privacy, not research or privacy.”
Denham told the conference she has called for a private meeting to be held later this month with key stakeholders in the issue of health databases and their use in research.
“I’m trying to get to the source of the problem in having this closed- door meeting in June,” Denham said in an interview following her speech. “I really want to get to the bottom of what the problem is and get some evidence.”