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

A few years back i organised a PhD summer school together with Gavin Doherty,  Jan Gulliksen, Conor Linehan and a whole bunch of very well known HCI people were lecturers. The course was is presented in this paper if you are curious: “ACM SIGCHI/EIT health summer school on user-centered design in e-health”. The course consisted of one week at Trinity College in Dublin, and one week in Stockholm at the Royal Institute of Technology and I participated in the background during the whole course. During this course I got to know several inspiring people, one of which is Leysan Nurgaleva. She spent an internship in my research group, and we wrote a paper together that has been in review since two years or so (!). You can read about Leysan’s experience from this collaboration around the paper here.

Last week the paper was finally published! It is really an interesting, and relevant, paper on patients’ sharing of their information to family and friends. The research questions answered are:

  • RQ1. What values, considerations, and conditions motivate patients to share or not to share medical records?
  • RQ2. What are the critical issues constraining the sharing of medical information in person and digitally?

Among other things the results showed that 1) Older and less educated patients share more. 2) Health conditions and illnesses affect sharing and 3) Sharing is connected to its perceived usefulness

You find the abstract below, and the full paper is found here.

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.