{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,27]],"date-time":"2026-09-27T22:32:42Z","timestamp":1790548362799,"version":"4.1.0"},"reference-count":23,"publisher":"Cambridge University Press (CUP)","issue":"1","license":[{"start":{"date-parts":[[2020,12,23]],"date-time":"2020-12-23T00:00:00Z","timestamp":1608681600000},"content-version":"unspecified","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Int J Technol Assess Health Care"],"published-print":{"date-parts":[[2021]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec id=\"S0266462320002123_sec_a1\"><jats:title>Context<\/jats:title><jats:p>The Ministry of Health in Qu\u00e9bec requested the National Institute of Excellence in Health and Social Services to produce clinical and implementation recommendations for the prophylaxis, diagnosis, and treatment of Lyme disease.<\/jats:p><\/jats:sec><jats:sec id=\"S0266462320002123_sec_a2\"><jats:title>Objectives<\/jats:title><jats:p>(i) Describe the process of trialing different modalities of patient engagement as a means to integrate a diversity of patient perspectives and (ii) Describe the learning process of INESSS regarding the integration of the patient perspective.<\/jats:p><\/jats:sec><jats:sec id=\"S0266462320002123_sec_a3\"><jats:title>Methodology<\/jats:title><jats:p>All documents were analyzed, and a survey with all advisory committee members and semi-structured interviews with stakeholders were conducted. Each interview was transcribed verbatim and imported into QDA miner software for the purposes of analysis. Data analysis was carried out concurrently with data collection to allow for an iterative approach between data collection and analysis.<\/jats:p><\/jats:sec><jats:sec id=\"S0266462320002123_sec_a4\" sec-type=\"results\"><jats:title>Results<\/jats:title><jats:p>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.<\/jats:p><\/jats:sec><jats:sec id=\"S0266462320002123_sec_a5\" sec-type=\"conclusions\"><jats:title>Conclusion<\/jats:title><jats:p>The combination of methods to collect and integrate patients\u2019 knowledge and patient associations\u2019 perspectives helped develop a comprehensive understanding of a controversial object of evaluation.<\/jats:p><\/jats:sec>","DOI":"10.1017\/s0266462320002123","type":"journal-article","created":{"date-parts":[[2020,12,23]],"date-time":"2020-12-23T09:25:17Z","timestamp":1608715517000},"source":"Crossref","is-referenced-by-count":8,"title":["Developing recommendations for the diagnosis and treatment of Lyme disease: the role of the patient's perspective in a controversial environment"],"prefix":"10.1017","volume":"37","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-5180-8139","authenticated-orcid":false,"given":"Marie-Pascale","family":"Pomey","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Paula L.","family":"Bush","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6711-6716","authenticated-orcid":false,"given":"Olivier","family":"Demers-Payette","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Audrey","family":"L'Esp\u00e9rance","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Louis","family":"Lochhead","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Isabelle","family":"Ganache","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Denis","family":"Roy","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"56","published-online":{"date-parts":[[2020,12,23]]},"reference":[{"key":"S0266462320002123_ref9","unstructured":"9. INESSS. Lyme disease - localized and disseminated stages (report). Current situation and support for change. English summary, 2019. Available from: https:\/\/www.inesss.qc.ca\/fileadmin\/doc\/INESSS\/Rapports\/Biologie_medicale\/Lyme_PPE\/INESSS_Lyme_EnglishSummary.pdf"},{"key":"S0266462320002123_ref11","doi-asserted-by":"publisher","DOI":"10.1016\/S0277-9536(02)00343-X"},{"key":"S0266462320002123_ref21","doi-asserted-by":"publisher","DOI":"10.1186\/s40900-016-0018-y"},{"key":"S0266462320002123_ref16","doi-asserted-by":"publisher","DOI":"10.1186\/s40900-016-0052-9"},{"key":"S0266462320002123_ref19","doi-asserted-by":"publisher","DOI":"10.1017\/S0266462315000240"},{"key":"S0266462320002123_ref5","volume-title":"Case study research","author":"Yin","year":"2003"},{"key":"S0266462320002123_ref18","doi-asserted-by":"publisher","DOI":"10.1111\/hex.12989"},{"key":"S0266462320002123_ref3","unstructured":"3. Quebec National Assembly. Commission de la sant\u00e9 et des services sociaux. Rapport. \u00c9tude des p\u00e9titions concernant l'instauration et l'application d'un plan d'action relatif \u00e0 la maladie de Lyme. Proc\u00e8s-verbal de la s\u00e9ance du 22 mars 2018 et Observations, conclusions et recommandations (Report. Consideration of petitions concerning the introduction and implementation of an action plan for Lyme disease. Minutes of the sitting of 22 March 2018 and Observations, Conclusions and recommendations (free translation), Canada, 2018. Available from: http:\/\/www.assnat.qc.ca\/fr\/travaux-parlementaires\/commissions\/csss\/mandats\/Mandat-39379\/index.html [accessed 2020 May 18]."},{"key":"S0266462320002123_ref1","unstructured":"1. INESSS. Avis Maladies de Lyme - stades localis\u00e9 et diss\u00e9min\u00e9s. Annexes compl\u00e9mentaires. (Lyme disease advisories - localized and disseminated stages. Additional annexes (free stranslation)). May 2019. 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