Using Data to Approach the Unknown: Patients’ and Healthcare Providers’ Data Practices in Fertility Challenges

Medical practices have always been data oriented: healthcare providers decisions are based on data, both clinically generated and patient reported. With the increased use of patient-generated health data (PGHD), other types of data are entering providers’ practices and influencing patient-provider collaboration. We studied the use of PGHD and its related data practices in the context of fertility, a health concern that is uncertain, complex, and data intensive. We interviewed 14 patients who are facing or have faced challenges to conceive and 5 healthcare providers specialized in infertility. Our findings show that patients and providers use PGHD in different ways but with the common goal of exploring “the unknown” generated by the uncertainties of fertility. Providers use patients’ data in a rational protocol, aiming to identify possible causes of infertility and define a treatment course. Patients use data in a much more emotional way, learning about their bodies while struggling with data interpretation challenges. By analyzing these data practices, we discuss the principles behind their differences and describe how they have individual benefits for each specific group. We then suggest that fertility technologies need to consider such principles, highlight the existing boundary between patients’ and providers’ data practices, and focus on bridging instead of merging them in order to facilitate collaboration and maintain their independent benefits.