|Title||Developing recommendations for the diagnosis and treatment of Lyme disease: the role of the patient's perspective in a controversial environment|
|Publication Type||Journal Article|
|Year of Publication||2020|
|Journal||Int J Technol Assess Health Care|
|Authors||Pomey MP, Bush PL, Demers-Payette O, L'Esperance A, Lochhead L, Ganache I, Roy D|
|Keywords||HTA advisory committee, Lyme disease, patient associations, patient involvement, patient partners, patients' experience, recommendations|
Five methods to integrate the perspectives of patients were used: (i) interviews with patients, (ii) inclusion of patient partners within the advisory committee, (iii) literature review, (iv) focus groups with one patient association, and (v) feedback from patient associations on recommendations intended for decision makers and other targeted stakeholders. The patient partners influenced decisions by sharing their experiential knowledge. The patient interviews and the literature review added an in-depth perspective on the disease and experience with the healthcare system. The patient association members shared their perspectives and helped disseminate the recommendation to sustain a practice change.