Anaïs Lacasse1, Véronique Gagnon1, Hermine Lore Nguena Nguefack1, Mélissa Gosselin1, M Gabrielle Pagé2,3, Lucie Blais4, Line Guénette5,6. 1. Département des sciences de la santé, Université du Québec en Abitibi-Témiscamingue (UQAT), Rouyn-Noranda, Québec, Canada. 2. Centre de recherche du Centre hospitalier de l'Université de Montréal (CRCHUM), Montréal, Québec, Canada. 3. Département d'anesthésiologie et de médecine de la douleur, Faculté de médecine, Université de Montréal, Montréal, Québec, Canada. 4. Faculté de pharmacie, Université de Montréal, Montréal, Québec, Canada. 5. Faculté de pharmacie, Université Laval, Québec, Québec, Canada. 6. Centre de recherche du CHU de Québec, Université Laval, Québec, Québec, Canada.
Abstract
PURPOSE: The linkage between patient-reported data and medico-administrative claims is of great interest for epidemiologic research. The goal of this study was to assess the willingness of people living with chronic pain to share personal identifiers on the web for the linkage of medico-administrative and patient-reported data. METHODS: This methodological investigation was achieved in the context of the implementation of the COPE Cohort. A web-based recruitment initiative targeting adults living with chronic pain was conducted in the province of Quebec (Canada). RESULTS: A total of 1935 participants completed the questionnaire (mean age: 49.86 ± 13.27; females: 83.69%), 921 (47.60%) of which agreed to data linkage and shared their personal identifiers (name, date of birth, health insurance number) online. The most common reasons for refusal were: concerns regarding data security/privacy (25.71%), and the belief that the requested data were too personal/intrusive (13.52%). Some participants did not understand the relevance of data linkage (11.81%). Participants from the COPE Cohort and those from the subsample who agreed to data linkage were comparable to other random samples of chronic pain individuals in terms of age and pain characteristics. CONCLUSIONS: Although approximately half of the participants refused data linkage, our approach allowed for the implementation of a data platform that contains a diverse and substantial sample. This investigation has also led to the formulation of recommendations for web-based data linkage, including placing items designed to assess willingness to share personal identifiers at the end of the questionnaire, adding explanatory videos, and using a mixed-mode questionnaire. This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.
PURPOSE: The linkage between patient-reported data and medico-administrative claims is of great interest for epidemiologic research. The goal of this study was to assess the willingness of people living with chronic pain to share personal identifiers on the web for the linkage of medico-administrative and patient-reported data. METHODS: This methodological investigation was achieved in the context of the implementation of the COPE Cohort. A web-based recruitment initiative targeting adults living with chronic pain was conducted in the province of Quebec (Canada). RESULTS: A total of 1935 participants completed the questionnaire (mean age: 49.86 ± 13.27; females: 83.69%), 921 (47.60%) of which agreed to data linkage and shared their personal identifiers (name, date of birth, health insurance number) online. The most common reasons for refusal were: concerns regarding data security/privacy (25.71%), and the belief that the requested data were too personal/intrusive (13.52%). Some participants did not understand the relevance of data linkage (11.81%). Participants from the COPE Cohort and those from the subsample who agreed to data linkage were comparable to other random samples of chronic pain individuals in terms of age and pain characteristics. CONCLUSIONS: Although approximately half of the participants refused data linkage, our approach allowed for the implementation of a data platform that contains a diverse and substantial sample. This investigation has also led to the formulation of recommendations for web-based data linkage, including placing items designed to assess willingness to share personal identifiers at the end of the questionnaire, adding explanatory videos, and using a mixed-mode questionnaire. This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.