During 2020, I had the pleasure to work together with Åsa Cajander, Isabella Scandurra and Axel Wolf on a book chapter for a revised version of THE Swedish book on medical informatics; “Medicinsk Informatik”.
The book is written in Swedish, and consists of 31 chapters that cover everything from terminologies and interoperability, to ethics and sustainability. Our chapter focuses on person-centered care (PCC) and the relationship with eHealth in general and patients access to the electronic health record specifically. PCC aims optimize the care process and its goals by starting from what is important and important to the patient regarding their health, quality of life and goals, as well as healthcare professionals’ expertise, experience and guidelines / procedures regarding evidence-based care and treatment. Key components in PCC includes that information and knowledge is shared by all stakeholders (including the patient), and that the patient can actively participate in their care, decision-making, and documentation.
We discuss how patients access to their records (including ‘open notes’), has potential to support – or may even be pre-requisits to – PCC, but that the technical tools themselves are not enough. Patients who have access to information often report positive outcomes, but PCC requires that healthcare professionals are also engaged in a dialogue and shared decision making. This requires a change in practice too, and a willingness to collaborate in new ways.