Opinion: Canadian policy on Lyme disease shouldn't be directed by patients

Canada recently held a conference on Lyme disease. The goal was to help prevent and reduce Lyme disease-related health risks to Canadians. But a public health law professor says patient advocacy groups have been given too central a role and he argues their influence should be reined in.

Last month, the federal government brought together patient advocacy groups and medical professionals to discuss Lyme disease.

Lyme disease is often a controversial subject, with some patient advocacy groups complaining that proper diagnostic tests aren't available in Canada. Some advocacy groups also disagree with the mainstream medical opinion on treatment.

The conference was arranged by the government in response to a successful bill from MP Elizabeth May, leader of the Green Party, which called for the creation of a national strategy on tracking and treating the disease.

The three-day conference brought together doctors, policy makers, scientists, and patient advocates.

But to Jacob Shelley, assistant professor in law at Western University, there's a danger in giving patients and patient advocates too much say in how the government creates health policy, especially in controversial areas like Lyme disease.

Shelley, along with Melanie McPhail, a graduate of law at Western, attended the conference and co-wrote an article arguing that the role of patient advocates in Lyme disease policy should be limited.

Shelley says that, while Lyme disease is a serious and apparently growing problem in Canada, there's a danger in giving equal weight between scientists and researchers, and people who represent those who have Lyme disease, or believe they have it. 

The science should be dictating and guiding our response (to Lyme Disease), and not the experience and not the ideology and not the expectations of patients or patient groups.- Jacob Shelley, Assistant Professor with the Faculty of Law & School of Health Studies at Western University

Shelley argues that like some other illnesses, the Internet has allowed for the spread of misinformation about Lyme disease, and explains why in his opinion the website had to close down the comments section on his article.

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