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.

A mixed-methods study comprising a cross-sectional online survey followed by virtual focus groups to further explore the survey responses.

Canada.

A total of 183 adult patients and caregivers completed our online survey. 29 survey respondents participated in the subsequent focus groups.

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.

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.

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.

To develop survey items for a national patient registry on Long COVID using a modified Delphi process.

This study was based on a modified Delphi process involving three rounds of anonymous, online surveys to develop consensus on and prioritise survey elements to be included in a minimum dataset for use in a national patient registry in Canada. Initial Long COVID items were identified through an environmental scan of the literature.

This study focused on healthcare systems in Canada and was conducted online.

A panel of 52 experts (patients, caregivers, clinicians and researchers) participated in all three rounds of the online survey. These participants were recruited through the Long COVID Web network and word of mouth.

In total, 243 survey elements related to care, quality of life and symptoms were included in round 1 of the survey. 200 reached consensus and moved to round 2 with two additional elements being developed based on open-ended responses. In round 2, participants ranked these survey elements and 34 advanced. In round 3, 33 survey elements met the threshold of consensus with one added a priori. The 33 survey elements were then used to develop a Long COVID minimum dataset, which consists of 48 items.

The findings affirm broad consensus for collecting data related to fatigue, post-exertional malaise, cardiovascular issues, respiratory problems and cognitive issues. This highlighted the desire for quality-of-life indicators and information related to care utilisation, quality and access.