Patients' moral attitudes toward electronic health records: Survey study with vignettes and statements.

Patient access to electronic health records gives rise to ethical questions related to the patient-doctor-computer relationship. Our study aims to examine patients' moral attitudes toward a shared EHR, with a focus on autonomy, information access, and responsibility. A de novo self-administered questionnaire containing three vignettes and 15 statements was distributed among patients in four different settings. A total of 1688 valid questionnaires were collected. Patients' mean age was 51 years, 61% was female, 50% had a higher degree (college or university), and almost 50% suffered from a chronic illness. Respondents were hesitant to hide sensitive information electronically from their care providers. They also strongly believed hiding information could negatively affect the quality of care provided. Participants preferred to be informed about negative test results in a face-to-face conversation, or would have every patient decide individually how they want to receive results. Patients generally had little experience using patient portal systems and expressed a need for more information on EHRs in this survey. They tended to be hesitant to take up control over their medical data in the EHR and deemed patients share a responsibility for the accuracy of information in their record.

Vulnerable patients' attitudes towards sharing medical data and granular control in patient portal systems: an interview study.

BACKGROUND: The collection, storage and exchange of medical information are becoming increasingly complex. More parties are involved in this process, and the data are expected to serve many different purposes beside patient care. This raises several ethical questions regarding privacy, data ownership, security and confidentiality. It is vital to consider patients' moral attitudes and preferences in this digital information exchange. The voice of vulnerable patients is rarely heard in research addressing these questions. This study aims to address this void. METHOD: Fourteen vulnerable patients without prior experience with patient portal systems were interviewed for this study. First, participants were introduced to the portal and given time to read their personal medical data. Afterwards, semi-structured interviews were conducted and analysed thematically to explore participants' first experience with the portal and their views on sharing medical information with care providers and other parties. RESULTS: Data analysis resulted in four themes: barriers to and benefits of portal access, emotional responses to reading medical information, diverging views on sharing information with third parties and balancing granular control and the best possible care. First, participants appreciated access to their health information in the portal despite experiencing obstacles. Second, reading medical information online could evoke emotional responses. Third, patients were generally unaware of the meaning and value of medical data to third parties, resulting in inconsistent views on data sharing. Finally, although patients generally supported granular control, they were willing to give up on their autonomy if that would ensure them to receive the best possible care. CONCLUSIONS: Patient portal design should take into consideration the obstacles that discourage vulnerable patients' access and hamper meaningful use. There is a need for more transparency on secondary use of medical data by third parties. Patients should be better informed about the potential consequences of sharing data with them.

'No daddy', 'A kind of daddy': words used by donor conceived children and (aspiring) parents to refer to the sperm donor.

Research has shown that the recipients of donor sperm can experience difficulties finding appropriate language to refer to the donor. Based on two qualitative analysis techniques, namely word count and empirical discourse analysis, we studied the words used to refer to the donor in heterosexual and lesbian (aspiring) parents and in donor conceived children. Findings show that the words used in these households are highly diverse and have at least four different interlinked functions: (1) to position the donor in relation to the nuclear family; (2) to safeguard the role of the social parent; (3) to clarify family structure; and (4) to present a positive picture of the donor. Both parents and children consciously reflect on what words to use to refer to the donor. Although parents try to keep words like 'father' and 'daddy' out of the family narrative, children use these words. These findings show that it is important for healthcare personnel and policy makers to reflect on the careful use of terminology when they address questions around sperm donation because the terminology invokes specific meanings that have an effect on how the recipients and their children perceive the role of the donor.