'One network' only approach funded by Federal Government rejected by Canadian Lyme Patient Groups10/25/2018 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!” 1https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5056863/ Signed By: Canadian Lyme Disease Foundation L’Association québécoise de la maladie de Lyme Lyme Disease Association of Alberta Lyme Disease Association of B.C. LymeHope Lyme Ontario 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 VOCAL Ottawa
1 Comment
John C Williamson
11/1/2018 07:31:03 am
Need to work closely with the Ontario Federation of Agriculture as farmers are out there everyday and getting ticks. No one is reaching out to them or proactively testing. Get a tick, take 2 pills and go away. End of contact.
Reply
Leave a Reply. |
AuthorWrite something about yourself. No need to be fancy, just an overview. Archives
November 2022
Categories |