Abstract
OBJECTIVES: To determine how patients use the internet to get health information and to identify their needs and preferences for a journal transparency tool which would highlight journal transparency practices. DESIGN: A mixed-methods study comprising a cross-sectional online survey followed by virtual focus groups to further explore the survey responses. SETTING: Canada. PARTICIPANTS: A total of 183 adult patients and caregivers completed our online survey. 29 survey respondents participated in the subsequent focus groups. PRIMARY AND SECONDARY OUTCOME MEASURES: We report descriptive statistics (counts and percentages) for all quantitative survey items. We used thematic content analysis for text-based survey responses. The focus groups asked patients about four key topics: (1) the content they would like to see in a journal transparency tool, (2) how they would like the content visually displayed, (3) how to best share the tool with patients and (4) how to determine whether the tool was successful over time. We conducted a thematic content analysis to identify core themes discussed. Focus group participants then rank-ordered the themes identified by their perceived importance. RESULTS: Of the 183 survey respondents, 146 (82%) indicated they use the internet most often when looking for health information, 66 (37%) indicated they sometimes read original research articles when searching for health information and 92 (52%) indicated they sometimes have difficulty knowing if the information they read online is reliable. Approximately half (86; 49%) of the survey respondents had never heard of predatory journals. We identified 32 themes across the four key topic areas that were discussed in the focus groups. CONCLUSIONS: Patients have expressed a need for a journal transparency tool. This study will inform the tool's development to ensure that it meets the needs and preferences of patients.