TY - JOUR
T1 - ‘I do not share it with others. No, it’s for me, it’s my care’: On sharing of patient accessible electronic health records
AU - Nurgalieva, Leysan
AU - Cajander, Åsa
AU - Moll, Jonas
AU - Åhlfeldt, Rose-Mharie
AU - Huvila, Isto
AU - Marchese, Maurizio
N1 - PMID: 32264734
PY - 2020
Y1 - 2020
N2 - 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.
AB - 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.
U2 - 10.1177/1460458220912559
DO - 10.1177/1460458220912559
M3 - Article
SN - 1460-4582
VL - 26
SP - 2554
EP - 2567
JO - Health Informatics Journal
JF - Health Informatics Journal
IS - 4
ER -