This study explores patients’ perspectives on sharing their personal health data, which is traditionally shared through discussions with peers and relatives. However, other possibilities for sharing have emerged through the introduction of online services such as Patient Accessible Electronic Health Records (PAEHR). In this article, we investigate strategies that patients adopt in sharing their PAEHR. Data were collected through a survey with 2587 patients and through 15 semi-structured interviews with cancer patients. Results show that surprisingly few patients share their information, and that older patients and patients with lower educational levels share more frequently. A large majority of patients trust the security of the system when sharing despite the high sensitivity of health information. Finally, we discuss the design implications addressing identified problems when sharing PAEHR, as well as security and privacy issues connected to sharing.
In 2012 Patients Accessible Electronic Health Records (PAEHR) was introduced in Region Uppsala, Sweden. When PAEHR was introduced heath care professionals were very concerned especially in relation to potential negative effects on their work environment. However, few studies exist that investigate in what way work environments have been affected, and no studies have focused on the nurses' working in primary care. Hence, the purpose of this study was to fill this gap through seven interviews with primary care nurses that were transcribed and thematically analysed. The study shows that the nurses' experiences an altered contact as patients accessing PAEHR came prepared to meetings with more informed questions. They also experienced that the service had increased their work load and that it creates uncertainty for nurses who do not know when to inform the patient about test results etc. Finally, some implications are discussed in relation to the patients' role in shared decision making.
Ensuring security of online health records and patients' perceptions of security are concerns in adolescent healthcare. Little is known about adolescents' perceptions about healthcare's ability to protect online health records. This article explores adolescents' perspectives on security and privacy of their online health records, potential differences based on gender and health, attitudes to sharing information, and perceptions of what constitutes sensitive information.
During recent years, patient accessible electronic health records (PAEHRs) have been implemented nationally in Sweden, as well as internationally, as a means of supporting patient engagement and shared decision making. Few studies have, however, investigated the long-term effects of PAEHRs on communicaiton with care professionals and involvement in care. The national survey study presented here, answered by 2587 patients in Sweden, focuses on these aspects specifically. The results show that the Swedish PAEHR system Journalen has had a positive impact on communication with care overall (84% agree or strongly agree with that communication with medical staff has improved), but only 31% agree or strongly agree with that the content of the PAEHR is discussed with care professionals. Journalen also seems to have a positive impact on involvement in care, but the results are mixed when it comes to effects on shared decision making.
Introduction Patient accessible electronic health records can be used to inform and empower patients. However, their use may require complementary information seeking since they can be difficult to ...
