“ Where am I ? ” Finding Patients in the Process of Navigating a Complex

As a central component of healthcare quality improvement efforts in the United States, patient participation in care has become increasingly common. However, along with the benefits, increased participation often requires significant patient effort – for example, to learn enough to be able to have productive discussions with their healthcare provider. Building upon our previous work, in which we identified online health forum posts containing users’ laboratory test results and preliminarily analyzed relevant posts, here we report the results of additional qualitative analyses. The goal of this paper is to propose initial characterizations of patient information and knowledge needs in different situations. These results will inform our future work. Eventually, we hope that this line of research will offer insights that will improve patient-provider communication channels, especially those supported by healthcare technologies, as well as informal sources of support, so that they provide more personalized information that better meets patients’ needs.