Editorial: Health data could save lives

It appears that a crisis some years in the making might finally be coming to a head. Medical researchers across the country are fed up with the time it takes to get vital information out of the B.C. health ministry.

The ministry holds perhaps the most complete set of patient records in North America. The material is a treasure trove for researchers seeking insights into adverse drug reactions, the success of various treatments for cancer, more effective strategies for dealing with chronic diseases such as multiple sclerosis and so on.

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But in some cases, two years pass before staff respond to requests for access. That causes a number of problems.

Canada’s national funding agencies, such as the Canadian Institutes of Health Research, usually limit grants to three years. But that time frame is often unachievable because the ministry moves so slowly. Funding can be jeopardized as a result.

Things got so bad a couple of years ago that the CIHR warned in writing that grant requests from B.C. researchers might be affected if the situation didn’t improve.

In addition, it appears the ministry has failed in its promise to collaborate with an important nationwide initiative.

In 2011, the federal government identified a serious shortfall in knowledge about the potential side-effects of new drugs. Ottawa and most of the provinces agreed that research should be fast-tracked to remedy this problem.

B.C. played a leading role in pushing for this initiative. But when it came time to deliver, the ministry could not meet the accelerated schedule.

A senior member of the project from another province called this turn of events “unfortunate,” and pointed to a major study that had to be completed without B.C. data. The investigation looked at the risk to pregnant women of taking an acne drug linked to birth defects. B.C.’s health ministry has a complete record of patient histories that would have been invaluable, but couldn’t produce the data on time.

The seriousness of the situation isn’t lost on government. A working group of senior officials has been set up to look for solutions. Researchers say there has been some modest improvement in turnaround times.

But perhaps it’s time to move in a different direction. The health ministry is a poor location for such a detailed and time-consuming process. When managers aren’t fighting fires, they’re distracted by other matters, such as funding cuts and staff shortages. Keeping the data highway open is never going to be a top priority.

There is also, regrettably, the ever-present reality of political interference. The current government has gone to extraordinary lengths to give the drug industry a place at the table. Several former health ministers have talked frankly about the tremendous pressures brought to bear by Big Pharma.

While most Canadians support using personal health data for medical research, they do not want it used for commercial purposes. But if the ministry retains control, there are endless ways for the industry to get its foot in the door.

It might be preferable to create an arm’s-length agency, beyond reach of political wire-pulling, where this important work can be done. Manitoba and Ontario have already gone this route.

Give the new agency an oversight committee of senior public servants, academic researchers and health-authority representatives. Require it to comply with stringent privacy regulations to ensure that files are stripped of any information that could reveal patient identities.

Then let it manage the provincial database with a mandate to speed up research.

This is not an easy matter to resolve. There are egos and vested interests involved.

But patient lives and well-being are at stake. A more timely and politically insulated approach is needed.

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