Patient question set proliferation: scope and informatics challenges of patient question set management in a large multispecialty practice with case examples pertaining to tobacco use, menopause, and Urology and Orthopedics specialties

BACKGROUND: Health care institutions have patient question sets that can expand over time. For a multispecialty group, each specialty might have multiple question sets. As a result, question set governance can be challenging. Knowledge of the counts, variability and repetition of questions in a multispecialty practice can help institutions understand the challenges of question set proliferation. METHODS: We analyzed patient-facing question sets that were subject to institutional governance and those that were not. We examined question variability and number of repetitious questions for a simulated episode of care. In addition to examining general patient question sets, we used specific examples of tobacco questions, questions from two specialty areas, and questions to menopausal women. RESULTS: In our analysis, there were approximately 269 institutionally governed patient question sets with a mean of 74 questions per set accounting for an estimated 20,000 governed questions. Sampling from selected specialties revealed that 50 % of patient question sets were not institutionally governed. We found over 650 tobacco-related questions in use, many with only slight variations. A simulated use case for a menopausal woman revealed potentially over 200 repeated questions. CONCLUSIONS: A group practice with multiple specialties can have a large volume of patient questions that are not centrally developed, stored or governed. This results in a lack of standardization and coordination. Patients may be given multiple repeated questions throughout the course of their care, and providers lack standardized question sets to help construct valid patient phenotypes. Even with the implementation of a single electronic health record, medical practices may still have a health information management gap in the ability to create, store and share patient-generated health information that is meaningful to both patients and physicians. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12911-016-0279-2) contains supplementary material, which is available to authorized users.