‘I do not share it with others. No, it’s for me, it’s my care’: On sharing of patient accessible electronic health records

Abstract

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.

Understanding the Barriers and Facilitators to Sharing Patient-Generated Health Data Using Digital Technology for People Living With Long-Term Health Conditions: A Narrative Review

“…However, individuals with mental disorders prefer highly structured interfaces due to lower psychological risks and privacy concerns." (39) Nurgalieva et al (42) also highlight how different conditions may elicit a range of privacy concerns. They show how cancer patients and psychiatric patients were notably hesitant to share via a national digital platform for the sharing of personal health information.…”

“…Here we address the degree of trust or distrust that is established between an individual and the proposed recipient of their PGData. A quarter of the articles discussed ‘trust' in relation to the sharing of PGData ( 17 , 18 , 26 , 30 , 31 , 33 , 42 , 44 ). In the majority of these papers, trust as a barrier to the sharing of PGData centered on distrust of the recipient .…”

“…Nurgalieva et al ( 42 ) also highlight how different conditions may elicit a range of privacy concerns. They show how cancer patients and psychiatric patients were notably hesitant to share via a national digital platform for the sharing of personal health information.…”

Ikääntyvien terveystietokäyttäytyminen ja hyödylliseksi koetut digitaaliset terveyspalvelut

“…Systemaattisen katsauksen perusteella ikääntyvät aikuiset käyttävät digitaalisia terveyspalveluita viestintään, tiedonjakamiseen, palautteen hankkimiseen ja valmistautuessaan terveydenhuoltokäynneille (Hirvonen et al, 2020). Nuorempiin aikuisiin verrattuna, tiedon jakaminen vaikuttaisi olevan tavallisempaa vanhempien keskuudessa (Nurgalieva et al, 2020). Palvelut tukevat ikääntyvien mahdollisuutta asettaa itselleen tavoitteita, seurata oireita, suunnitella omaa toimintaansa, asettaa muistutuksia sekä tarjota suosituksia ja informaatiota.…”

Usage of eHealth/mHealth Services among Young Czech Adults and the Impact of COVID-19: An Explorative Survey

“…Within the second category , health information seeking [ 7 , 8 ] is the dominant class of activities referring to a broad range of tasks. On the one hand, this conceptual label may be used for more formal activities, such as accessing tethered electronic health records [ 9 ] via patient portals [ 10 ]. On the other hand, internet discussion forums [ 11 ], patient support groups on social networks [ 12 ] and special patient websites [ 13 ] play an important role in the lives of many patients nowadays.…”