The importance of consumer- and patient-oriented perspectives in biomedical and health informatics

Extract

An American Medical Informatics Association position paper reporting a clinical informatics practice analysis¹ leads off this issue of Journal of the American Medical Informatics Association and is contextualized by an editorial from Doug Fridsma² in which he notes that “Recognition of the unique set of knowledge and skills associated with clinical/health informatics practice will create opportunities and raise expectations for informatics professionals.” Regarding expectations for informatics professionals, the clinical practice analysis includes multiple specific tasks related to consumers and patients with associated areas of knowledge such as social determinants of health, use of patient-generated data, and consumer-facing health informatics applications (eg, patient portals, mobile health apps and devices, disease management, patient education, behavior modification). To emphasize this aspect of our field, I highlight other articles in this issue that explicitly reflect a consumer- or patient-oriented perspective.

Bajracharya et al³ examined patients’ experiences of completing a 39-item family history via a patient portal; the results were summarized and integrated into their electronic health record (EHR). About one-third of 4223 patients who completed the family history also completed an online survey. Inductive analysis of free-text responses generated 5 main themes. On the positive side, patients described feeling empowered through sharing their family history and anticipated future predictive value from having the information integrated into the EHR. However, although the history tool was considered easy to use, it was also characterized as tedious, with some respondents raising concerns about validity (eg, not reflecting the complexity of family history) and privacy (eg, possible influence on insurance and employment). These findings suggest not only the continued promise of such an approach, but also the need for solutions that better address patient concerns.