Patients, privacy and the internet

Using Internet in healthcare introduces new challenges due to increased automation of gathering, use and distribution of personal information. What does this mean for patients' privacy and autonomy?

 In this project we ask patients what kind of personal health information they are willing to share, how they share it, and with whom.

Who owns the information patients share on the Internet? Who decides who has access to that information? We also examine the legislation concerning privacy and data security for patients. The answers to these questions will help us design alternative solutions where patients can control their own health information when online. Our aim is to support patients in making informed decisions about what they share on Internet and with whom."

The research is carried out in Norway and Canada, in collaboration with hospitals and their young patients.

The protection of personal information has become a major issue. In order to implement the law, automated procedures are being used for removing or encrypting all information that might identify the patient. Patients are very active in online social media, such as blogs, Facebook, and PatientsLikeMe, discussing and sharing health information. Some people have chosen to share very personal health experiences online.

Patient autonomy plays an important role when dealing with your illness and recovery. But how can you decide for yourself when you are on the Internet? Are you in control of your own privacy when using social media? How do you decide to share some and not all personal health information? We study how young patients understand and negotiate their privacy when they access and share their personal health information online. We also look at the laws, patient rights, commercial interests, and the social norms that regulate patient information sharing in open and closed Internet-based services.

This is one of three projects in the larger research project Autonomy and Automation in an information Society for all (A3)

The project was carried out by the research group Design of information systems, Departement of Informatics, University of Oslo. A3 was founded by The Norwegian Research Council; Verdict (2009 - 2014).