Table 1.
Questionnaire results regarding the opinions related to the topic “Techniques to facilitate data sharing practices”.
| Questionnaire items | Answers in % | |||||
|---|---|---|---|---|---|---|
| Strongly disagree | Somewhat disagree | Neutral | Somewhat agree | Strongly agree | ||
| 1.1 | In your opinion, there has been progress with respect to health data sharing in Switzerland in the last few years | 8 | 23 | 0 | 46 | 23 |
| 1.2 | In order to promote data sharing… | |||||
| a)… data-collectors should receive authorship or other collaboration opportunities in return for the datasets they share | 29 | 29 | 0 | 29 | 21 | |
| b)…the academic reward mechanism for those who share data should be improved | 0 | 8 | 23 | 38 | 31 | |
| c)… there should be financial compensations for data-collectors for data sharing activities | 0 | 23 | 31 | 31 | 15 | |
| Law is much more problematic | Law is more problematic | Equally problematic | Application is more problematic | Application is much more problematic | ||
| 1.3 | With respect to data sharing, is the lack-of-clarity in data protection law itself more problematic or the lack-of-clarity in the application of the law? | 0 | 8 | 31 | 46 | 15 |
| Strongly disagree | Somewhat disagree | Neutral | Somewhat agree | Strongly agree | ||
| 1.4 | It is reasonable to request equivalent data in exchange for one's own dataset, in particular when collaborating with external researchers | 23 | 23 | 31 | 15 | 8 |
| 1.5 | I believe I will be more inclined to share my data if there are standardised legally-binding data sharing agreement templates that stipulate clear data ownership, processing and publication rules to protect my interests and those of data subjects | 15 | 0 | 8 | 23 | 54 |
| 1.6 | I believe I will be more inclined to share my data if I can keep an oversight on the data processing activities of data recipients to prevent any misinterpretation or misuse | 8 | 23 | 8 | 38 | 23 |
| 1.7 | I believe that better…………with other researchers/stakeholders would incentivise data-collectors to share ‘their’ data | |||||
| a)… communication… | 0 | 0 | 15 | 85 | 0 | |
| b)…coordination… | 0 | 0 | 16 | 69 | 15 | |
| c)…reciprocal knowledge… | 0 | 0 | 16 | 69 | 15 | |
| 1.8 | I agree that data collectors should keep control over ‘their’ data. | 0 | 16 | 15 | 46 | 23 |
| 1.9 | If I want to answer a research question using already existing health data sources (e.g., hospital databases or registers), it is difficult to find these data sources | 0 | 33 | 25 | 25 | 17 |
| 1.10 | If I want to answer a research question using already existing health data sources (e.g., hospital databases or registers), it is difficult to gain access to these data sources | 0 | 8 | 0 | 67 | 25 |
| 1.11 | Limiting the discretion of data-collectors (i.e., the liberty of data-collectors to decide ‘freely’ who can get access to ‘their’ data and who cannot) would facilitate having access to existing data sources | 8 | 8 | 23 | 53 | 8 |
| 1.12 | I believe it would be easier to use existing data sources, if they were all collected with the prospect of being re-used at a later stage by external researchers or institutions | 8 | 0 | 0 | 15 | 77 |
| Definitely more formal collaborations | Rather more formal collaborations | Neutral | Rather more informal contacts | Definitely more informal contacts | ||
| 1.13 | To favour data sharing between different stakeholders and to build trust, we would need more formal collaborations (e.g., information about what other researchers/stakeholders are doing) or more informal contacts (e.g., meeting, networking events etc.) | 15 | 8 | 46 | 23 | 8 |
Note. The total number of respondents were 13. In 1.9 and 1.10, one person did not respond. Percentages are rounded up.