Patients’ attitudes towards sharing their health information

Designing a Patient-Centered User Interface for Access Decisions about EHR Data: Implications from Patient Interviews

“…Similar to previous research (e.g., 30,31 ), participants in our study expressed a wide variety of preferences for what information they would like to share with whom, 14 and how they would like to achieve this control (see Table 1). While all participants wanted to control who could view information contained in their EHRs at some level of granularity, the level at which participants wanted to exert regular control varied.…”

“…Furthermore, there were differences in how users thought they could most effectively achieve this control. For example, some conceptualized allowing access to information (similar to findings reported in 30 and 32 ), while others talked about restricting access to information. One user interface (UI) approach for supporting diverse preferences at a variety of levels of granularity simultaneously is to provide hierarchical control.…”

“…For example, patients spontaneously expressed the desire for providers to access only information that was necessary for their immediate care, a finding echoed in similar research (e.g., 30 ) and implied in 3 ; "every consumer, doctor, researcher, and institution has appropriate access"). What constitutes "appropriate" access, or better yet, what is optimal for providers to view during any specific care event is an open question.…”

Patient Preferences in Controlling Access to Their Electronic Health Records: a Prospective Cohort Study in Primary Care

“…When it was specified that the information could include potentially sensitive data (e.g., regarding sexually transmitted diseases or mental health), 70 % agreed to allow access to a doctor or practice nurse. 7 In another study, 86 % of HIV patients said that they would be willing to share personal health information through an electronic record with their primary HIV care provider, 78 % agreed to share that information with other clinicians in the same clinic, and 78 % agreed to share the information with other health care providers such as emergency or hospital personnel. 8 In a third study, this time of patients without sensitive information in their EHRs, 100 % said that they would share less sensitive items with their primary care physician, while 78 % would share highly sensitive items.…”

“…Previous research has investigated patient preference with respect to sharing EHR data with both health care providers (e.g., physicians) and non-provider recipients (e.g., family members). [6][7][8] However, none of these studies has investigated patient choices in a health care setting where these preferences were implemented, thereby affecting the actual sharing of their EHR data. This paper presents findings concerning patients' choices for access to personal health information in an EHR in a clinical setting for the first time.…”