OBJECTIVE: This study sought to describe gender representation in leadership and recognition within the U.S. biomedical informatics community. MATERIALS AND METHODS: Data were collected from public websites or provided by American Medical Informatics Association (AMIA) personnel from 2017 to 2019, including gender of membership, directors of academic informatics programs, clinical informatics subspecialty fellowships, AMIA leadership (2014-2019), and AMIA awardees (1993-2019). Differences in gender proportions were calculated using chi-square tests. RESULTS: Men were more often in leadership positions and award recipients (P < .01). Men led 74.7% (n = 71 of 95) of academic informatics programs and 83.3% (n = 35 of 42) of clinical informatics fellowships. Within AMIA, men held 56.8% (n = 1086 of 1913) of leadership roles and received 64.1% (n = 59 of 92) of awards. DISCUSSION: As in other STEM fields, leadership and recognition in biomedical informatics is lower for women. CONCLUSIONS: Quantifying gender inequity should inform data-driven strategies to foster diversity and inclusion. Standardized collection and surveillance of demographic data within biomedical informatics is necessary.

OBJECTIVE: The study sought to conduct a systematic review to explore the functions utilized by electronic cancer survivorship care planning interventions and assess their effects on patient and provider outcomes. MATERIALS AND METHODS: Based on PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analysis) guidelines, studies published from January 2000 to January 2020 were identified in PubMed, CINAHL, EMBASE, PsychINFO, Scopus, Web of Science, and the ACM Digital Library . The search combined terms for cancer, survivorship, care planning, and health information technology (HIT). Eligible studies evaluated the effects of a HIT intervention on usability, knowledge, process, or health-related outcomes. A total of 578 abstracts were reviewed, resulting in 60 manuscripts describing 40 studies. Thematic analyses were used to define meta-themes of system functions, and Fisher's exact tests were used to examine associations between functions and outcomes. RESULTS: Patients were the target end users for 18 interventions, while 12 targeted providers and 10 targeted both groups. Interventions used patient-reported outcomes collection (60%), automated content generation (58%), electronic sharing (40%), persistent engagement (28%), and communication features (20%). Overall, interventions decreased the time to create survivorship care plans (SCPs) and supported care planning knowledge and abilities, but results were mixed for effects on healthcare utilization, SCP sharing, and provoking anxiety. Persistent engagement features were associated with improvements in health or quality-of-life outcomes (17 studies, P = .003). CONCLUSIONS: Features that engaged users persistently over time were associated with better health and quality-of-life outcomes. Most systems have not capitalized on the potential of HIT to share SCPs across a care team and support care coordination.

OBJECTIVE: The study sought to describe patient-entered supplemental information on symptomatic adverse events (AEs) in cancer clinical research reported via a National Cancer Institute software system and examine the feasibility of mapping these entries to established terminologies. MATERIALS AND METHODS: Patients in 3 multicenter trials electronically completed surveys during cancer treatment. Each survey included a prespecified subset of items from the National Cancer Institute's Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE). Upon completion of the survey items, patients could add supplemental symptomatic AE information in a free text box. As patients typed into the box, structured dropdown terms could be selected from the PRO-CTCAE item library or Medical Dictionary for Regulatory Activities (MedDRA), or patients could type unstructured free text for submission. RESULTS: Data were pooled from 1760 participants (48% women; 78% White) who completed 8892 surveys, of which 2387 (26.8%) included supplemental symptomatic AE information. Overall, 1024 (58%) patients entered supplemental information at least once, with an average of 2.3 per patient per study. This encompassed 1474 of 8892 (16.6%) dropdowns and 913 of 8892 (10.3%) unstructured free text entries. One-third of the unstructured free text entries (32%) could be mapped post hoc to a PRO-CTCAE term and 68% to a MedDRA term. DISCUSSION: Participants frequently added supplemental information beyond study-specific survey items. Almost half selected a structured dropdown term, although many opted to submit unstructured free text entries. Most free text entries could be mapped post hoc to PRO-CTCAE or MedDRA terms, suggesting opportunities to enhance the system to perform real-time mapping for AE reporting. CONCLUSIONS: Patient reporting of symptomatic AEs using a text box functionality with mapping to existing terminologies is both feasible and informative.

The Crohn's and Colitis Foundation of America Partners Patient-Powered Research Network (PPRN) seeks to advance and accelerate comparative effectiveness and translational research in inflammatory bowel diseases (IBDs). Our IBD-focused PCORnet PPRN has been designed to overcome the major obstacles that have limited patient-centered outcomes research in IBD by providing the technical infrastructure, patient governance, and patient-driven functionality needed to: 1) identify, prioritize, and undertake a patient-centered research agenda through sharing person-generated health data; 2) develop and test patient and provider-focused tools that utilize individual patient data to improve health behaviors and inform health care decisions and, ultimately, outcomes; and 3) rapidly disseminate new knowledge to patients, enabling them to improve their health. The Crohn's and Colitis Foundation of America Partners PPRN has fostered the development of a community of citizen scientists in IBD; created a portal that will recruit, retain, and engage members and encourage partnerships with external scientists; and produced an efficient infrastructure for identifying, screening, and contacting network members for participation in research.

Owing to lack of standardization for eliciting patient symptoms, the limited time available during clinical encounters, and the often-competing priorities of patients and providers, providers may not appreciate the full spectrum of the patient's symptom experience. Using electronically collected patient-reported outcomes to capture the review of system outside of the clinic visit may not only improve the efficiency, completeness, and accuracy of data collection for the review of system, but also provide the opportunity to operationalize incorporating the patient's voice into the electronic health record. While the necessary technology is already available, multiple stakeholders, including electronic health record vendors, clinicians, researchers, and professional societies, need to align their interests before this can become a widespread reality.