Chronic pain patients' willingness to share personal identifiers on the web for the linkage of medico‐administrative claims and patient‐reported data: The chronic pain treatment cohort

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 chronic pain treatment (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: (1) concerns regarding data security/privacy (25.71%) and (2) 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.

Impact of the COVID-19 pandemic on the pharmacological, physical, and psychological treatments of pain: findings from the Chronic Pain & COVID-19 Pan-Canadian Study

“…Data were collected with SurveyMonkey. A web-based recruitment strategy, which was shown as effective in previous studies, 37,38 was implemented to reach a community sample of Canadian living with CP. The questionnaire's hyperlink that led potential participants to the landing page of the study where enough information was provided for informed consent was included in the invitation message.…”

Gender Differences in Medication Adverse Effects Experienced by People Living With Chronic Pain

“…This retrospective study was conducted using data from the C hr O nic P ain tr E atment (COPE) Cohort ( 29 ), a dataset intended to better understand the real-world utilization of pharmacological, physical and psychological treatments among people living with CP. The COPE Cohort was implemented in the province of Quebec (Canada) and includes 1,935 adults living with CP who completed a web-based questionnaire between June and October 2019.…”

“…Self-reported COPE data was also intended to be linked to longitudinal administrative data (medical and prescription claims). The complete methodology of the COPE Cohort implementation is described elsewhere ( 29 ). The study protocol was approved by the Université du Québec en Abitibi-Témiscamingue's research ethics committee and informed consent was obtained from all participants.…”

“…Other covariates measured in the COPE Cohort ( 29 ) and included in the present study were sociodemographic characteristics and health profile (physical functioning, general health, psychological distress, substance abuse, smoking status, use of cannabis).…”

Swallowing the pill of adverse effects: A qualitative study of patients' and pharmacists' experiences and decision‐making regarding the adverse effects of chronic pain medications

“…Participants living with chronic pain were recruited in a provincial web-based prospective cohort study examining pharmacological and nonpharmacological treatments used by adults living with chronic pain. 54 Additional information about the cohort study and recruitment procedures is shown in Figure 1. For this qualitative study, eligibility criteria included: (a) living with pain for at least 6 months, (b) using pharmacological pain treatments, and (c) experiencing one or more moderate to severe adverse effects.…”