Grant: Cat. Grant: CBR in Climate Change Priority Areas- Alt. Diagnoses of Lyme Disease

Lyme disease is spreading into new regions of Canada due to climate change. This geographic expansion poses significant challenges for healthcare systems and patients, particularly in areas where Lyme disease was once rare. As cases rise, there is growing concern about the accuracy and reliability of diagnostic methods. Current diagnostic tests often fail, especially in the early stages when timely treatment is crucial, and even during later disseminated phases, where multi-system, non-specific symptoms may manifest. These failures can result in delayed diagnosis, misdiagnosis, and prolonged suffering for patients. In response, many patients seek alternative diagnostic methods through private healthcare systems, which often involve costly, non-validated approaches and may present conflicts of interest. This project adopts a community-based participatory research (CBPR) approach, working directly with Lyme disease patients to co-develop research that addresses these diagnostic shortcomings. The project consists of three key activities: patient journey mapping, a patient experiences survey, and a systematic literature review. Patient journey mapping will be used to document the sequence of events, decisions, and interactions that Lyme disease patients experience from symptom onset through diagnosis and treatment. This method will capture both the emotional and logistical barriers patients encounter. The patient experiences survey, co-developed with patient partners, will gather data on diagnostic challenges, unmet health needs, and the impact of delays in care on patients' physical and mental well-being. The systematic review will evaluate alternative diagnostic methods for Lyme disease, comparing them to conventional approaches. Results from the review will be used to develop accessible materials for patients and clinicians to inform evidence-based patient-centred practice and guide improvements in diagnostic tools and healthcare delivery.