Table 2 Respondents’ general beliefs and specific experiences related to sharing results
Number (% of survey respondents) or Mean ± SD | |
|---|---|
Do you think the results of health research studies should always be shared with participants involved in the studies? (n = 414) | |
Yes | 267 (64.5%) |
Not sure | 82 (19.8%) |
No | 65 (15.7%) |
Can you identify a study that meets the following criteria: (1) You were principal investigator or co-investigator with decision-making power for the study; (2) data analyses were completed at least 1 year ago; (3) the study involved human participants who gave informed consent (or biological material from humans who gave informed consent); and (4) you did not share results with the study’s participants? (n = 408) | |
Yes | 232 (56.9%) |
No | 176 (43.1%) |
At any point during the life of the study you identified, had you considered returning results to participants (not including academic publications/presentations)? (n = 148)a | |
I had not considered returning results to participants | 65 (43.9%) |
I had an intention to return results but no specific plan to do so | 46 (31.1%) |
I had considered returning results but decided not to do it | 25 (16.9%) |
I had an intention to return results and a specific plan to do so | 12 (8.1%) |
At any point, did you tell the participants in the study you identified that you would share the aggregated results of this study with them? (For example, some researchers include such language in the informed consent process) (n = 147) | |
No | 104 (70.7%) |
Unsure | 23 (15.6%) |
Yes | 20 (13.6%) |
Which of the following are ways in which the results of the study you identified were disseminated? (n = 144)b | |
Academic publication | 132 (91.7%) |
Academic conferences | 120 (83.3%) |
Verbal (community meetings) summary to the community/general public about the results of the study | 36 (25.0%) |
Press release or other mass media (e.g. radio, news website, newspaper, etc.) | 31 (21.5%) |
Written summary to the community/general public about the results of the study | 26 (18.1%) |
Other ways | 9 (6.3%) |
Policy briefs | 6 (4.2%) |
I/we made no effort to disseminate the study’s results | 5 (3.5%) |