Canadian Lyme disease patient groups united in rejecting the ‘one research network only’ concept of the federal government
[CanLyme Note: There is already another pan-Canadian research network that has been up and running for over a year, the Canadian Lyme Consortium. This network works closely with the patient groups together with physicians and scientists and has from it’s formation.]
Joint press release
“Lyme patient groups from across Canada are unified in their concern over the federal Minister of Health’s awarding of $4 million of Canadian taxpayer monies for Lyme disease research to a research group that has not included the patient voice in a meaningful and inclusive way from its initial conception and on up through all stages of research development.
We strongly agree with the CMAJ’s deputy editor, Kirsten Patrick, who wrote in the October 16, 2016 issue of the CMAJ:
‘For each step in the research process, investigators need to consider how best to involve patients in planning and decisions. For patient-relevant research to be meaningful, patient and public engagement in research cannot comprise a token lay person on a research ethics review board. Patients and their caregivers must be involved in decision-making at all steps in the research process, from design to choice of primary and secondary outcomes, through dissemination and implementation.’1
A robust and fully inclusive patient voice is of utmost importance in Lyme disease research for true advances in testing, diagnosis and treatment to come about.
Patient groups feel that at least two Lyme disease research networks are necessary in Canada to ensure differing viewpoints are heard. The status quo has not served Canadians well up-to-this-point. Differing opinions need to be heard, understood and embraced before we can effectively move this issue forward. Independent researchers can also make an impact and we need to ensure that they are also heard. While Lyme patient groups support thousands of Canadians who are now living with tick-borne illnesses, we also work hard to prevent even more Canadians from experiencing tick-borne illnesses down-the-road. It’s time for real change and that can only come about with meaningful patient engagement!”
Canadian Lyme Disease Foundation
L’Association québécoise de la maladie de Lyme
Lyme Disease Association of Alberta
Lyme Disease Association of B.C.
Manitoba Lyme and Tick-borne Diseases
New Brunswick Lyme Disease Association Inc. – LymeNB
Nova Scotia Lyme Disease Support Group
Ontario Lyme Alliance
Saskatchewan Lyme Disease Association