Unpacking the Use of Laboratory Test Results in an Online Health Community throughout the Medical Care Trajectory

Abstract

While easy patient access to laboratory test results is necessary for patient engagement in their healthcare, it is not sufficient to enable patients to thrive in this role ? they must be able to understand and act upon these data. In this study, we analyzed posts to an online health community (OHC) that contained a patient's laboratory test results. The objective was to understand the nature of patients' questions related to these data to gain insights into how to better support patients as they individually and collaboratively make sense of their data. We found that patients seek help on the OHC to understand and use their laboratory test results at multiple points in the medical care trajectory. Specifically, in the diagnosis phase, patients tend to be focused on comprehending their data, to be receiving emotionally charged results and, of course, to be engaging the OHC in naming their medical issues. In the treatment phase, patients are often using their laboratory test results to ask more focused questions to identify treatment options, to seek treatment guidance from peers, and to predict the likely course of their disease. Throughout both phases, individuals are highly engaged in the medical process and put in substantial effort to proactively prepare for their care and interactions with doctors. They enlist the OHC in these efforts for many reasons such as a lack of confidence in their doctor. We discuss how gaps in the provision of healthcare services lead to the significant work involved in managing the complex and dynamic interplay between OHCs and the healthcare system. We offer design recommendations both for technologies that provide patients with access to their medical records and for OHCs that will likely continue to play an important role in filling gaps in healthcare services.