Table 2 Codebook
Agency | Access and control |
Data sharing decision making factors | |
Data bartering and trading | |
Open sharing | |
Freedom | |
Common good | Altruism |
Data profit for the common good | |
Expertise | |
Trust | |
Adequate regulation and governance | Differentiated data sensibility |
Frameworks | |
Need for governance | |
Nuanced institutions | |
Uncertainties regarding data usage/sharing outside health | |
Risk and protections | Exploitation |
Restricting data profit | |
Profit linked with mistrust | |
Vulnerability and discrimination | |
Anonymized does not equal full privacy protection | |
Protection | |
Mistrust | |
Harm can occur even with anonymized and coded data |