Privacy commissioner Elizabeth Denham wants health-file linking brought within her purview. She made that recommendation to a provincial legislative committee reviewing her mandate.
This is a thoroughly bad idea, for reasons we鈥檒l come to shortly. But first, a brief explanation of file-linking.
Have you had breast cancer? If so, the first line of treatment is usually surgery.
But which was the best option in your case, a lumpectomy that isn鈥檛 disfiguring, or a radical mastectomy where the entire breast is removed?
Ideally, researchers at the B.C. Cancer Agency would answer that question by reviewing surgical data to see how women with tumours like yours fared under both scenarios.
But they can鈥檛, because while they have data on tumour sizes, they might not have data on surgical outcomes. Meanwhile, your health authority has data on surgical outcomes, but might not have data on tumour sizes.
Another example. Do children taking ritalin for an attention disorder do poorly in school? The Education Ministry has exam results, but it doesn鈥檛 have drug information. Fair Pharmacare has drug information, but no school scores.
To answer questions like these, researchers have to link files from two or more data sites. And there are hundreds in B.C.
Due to these difficulties, health-file linking was specifically carved out of the privacy commission鈥檚 mandate. It was felt that adding yet another layer of oversight would hinder research.
Now Denham, to be fair, has a reply to that. Patient medical records are some of the most sensitive documents in government care. It is essential that every feasible measure should be taken to protect their integrity.
In support of this argument, she could point to the occasion, in 2012, when a Health Ministry staffer mistakenly gave unencrypted patient data to a researcher.
The researcher realized the error immediately, and returned the file unread. No one鈥檚 privacy was invaded (there were no names or addresses in the data).
Nevertheless, mistakes do happen. Giving the commissioner power to oversee these activities might ensure greater security. (Though it鈥檚 difficult to see how this would prevent human error.)
But Denham is both overstating the privacy risks she perceives, and underestimating the harm another layer of monitoring would inflict.
First, the risk of a privacy breach. The procedure for getting approval to link health files is already the most onerous in Canada.
Before research projects can begin, permission must be given by the provincial Health Ministry. In addition, researchers must satisfy an ethics panel at their university, and data stewards at regional authorities. Experts in other provinces might also have to be consulted.
Navigating through this maze can take months, even years. At one point, a major funding agency considered halting all grants for health research in B.C., because the process was so lengthy.
There is also the reality that it would be professional suicide for a researcher to deliberately compromise patient privacy.
Now, the potential for harm if the commissioner gets involved. For historical as well as practical reasons, health data bases are scattered far and wide across the province. Tens of millions of dollars have been spent creating them.
But unless they can be linked, they might as well not exist. This is the future of health research in B.C. We would be cutting our throats to impede it.
Yet with the best of intentions, that is what the commissioner鈥檚 involvement would entail. We laid out in Saturday鈥檚 editorial some of the many difficulties government officials experience navigating privacy laws. These are, by their nature, inherently complex.
The last thing we need is to inflict similar confusion and uncertainty on medical research.
In essence, Denham is proposing a solution to a problem that doesn鈥檛 exist. The legislative committee should thank her, but politely decline.
