Comparison of family health history in surveys vs electronic health record data mapped to the observational medical outcomes partnership data model in the All of Us Research Program

OBJECTIVE: Family health history is important to clinical care and precision medicine. Prior studies show gaps in data collected from patient surveys and electronic health records (EHRs). The All of Us Research Program collects family history from participants via surveys and EHRs. This Demonstration Project aims to evaluate availability of family health history information within the publicly available data from All of Us and to characterize the data from both sources. MATERIALS AND METHODS: Surveys were completed by participants on an electronic portal. EHR data was mapped to the Observational Medical Outcomes Partnership data model. We used descriptive statistics to perform exploratory analysis of the data, including evaluating a list of medically actionable genetic disorders. We performed a subanalysis on participants who had both survey and EHR data. RESULTS: There were 54 872 participants with family history data. Of those, 26% had EHR data only, 63% had survey only, and 10.5% had data from both sources. There were 35 217 participants with reported family history of a medically actionable genetic disorder (9% from EHR only, 89% from surveys, and 2% from both). In the subanalysis, we found inconsistencies between the surveys and EHRs. More details came from surveys. When both mentioned a similar disease, the source of truth was unclear. CONCLUSIONS: Compiling data from both surveys and EHR can provide a more comprehensive source for family health history, but informatics challenges and opportunities exist. Access to more complete understanding of a person\u27s family health history may provide opportunities for precision medicine

Importance of missingness in baseline variables: A case study of the All of Us Research Program.

ObjectiveThe All of Us Research Program collects data from multiple information sources, including health surveys, to build a national longitudinal research repository that researchers can use to advance precision medicine. Missing survey responses pose challenges to study conclusions. We describe missingness in All of Us baseline surveys.Study design and settingWe extracted survey responses between May 31, 2017, to September 30, 2020. Missing percentages for groups historically underrepresented in biomedical research were compared to represented groups. Associations of missing percentages with age, health literacy score, and survey completion date were evaluated. We used negative binomial regression to evaluate participant characteristics on the number of missed questions out of the total eligible questions for each participant.ResultsThe dataset analyzed contained data for 334,183 participants who submitted at least one baseline survey. Almost all (97.0%) of the participants completed all baseline surveys, and only 541 (0.2%) participants skipped all questions in at least one of the baseline surveys. The median skip rate was 5.0% of the questions, with an interquartile range (IQR) of 2.5% to 7.9%. Historically underrepresented groups were associated with higher missingness (incidence rate ratio (IRR) [95% CI]: 1.26 [1.25, 1.27] for Black/African American compared to White). Missing percentages were similar by survey completion date, participant age, and health literacy score. Skipping specific questions were associated with higher missingness (IRRs [95% CI]: 1.39 [1.38, 1.40] for skipping income, 1.92 [1.89, 1.95] for skipping education, 2.19 [2.09-2.30] for skipping sexual and gender questions).ConclusionSurveys in the All of Us Research Program will form an essential component of the data researchers can use to perform their analyses. Missingness was low in All of Us baseline surveys, but group differences exist. Additional statistical methods and careful analysis of surveys could help mitigate challenges to the validity of conclusions

Impact of High-Dose-Rate Brachytherapy Training via Telehealth in Low- and Middle-Income Countries.

PurposeOur objective was to demonstrate the efficacy of a telehealth training course on high-dose-rate (HDR) brachytherapy for gynecologic cancer treatment for clinicians in low- and middle-income countries (LMICs).MethodsA 12-week course consisting of 16 live video sessions was offered to 10 cancer centers in the Middle East, Africa, and Nepal. A total of 46 participants joined the course, and 22 participants, on average, attended each session. Radiation oncologists and medical physicists from 11 US and international institutions prepared and provided lectures for each topic covered in the course. Confidence surveys of 15 practical competencies were administered to participants before and after the course. Competencies focused on HDR commissioning, shielding, treatment planning, radiobiology, and applicators. Pre- and post-program surveys of provider confidence, measured by 5-point Likert scale, were administered and compared.ResultsForty-six participants, including seven chief medical physicists, 16 senior medical physicists, five radiation oncologists, and three dosimetrists, representing nine countries attended education sessions. Reported confidence scores, both aggregate and paired, demonstrated increases in confidence in all 15 competencies. Post-curriculum score improvement was statistically significant (P < .05) for paired respondents in 11 of 15 domains. Absolute improvements were largest for confidence in applicator commissioning (2.3 to 3.8, P = .009), treatment planning system commissioning (2.2 to 3.9, P = .0055), and commissioning an HDR machine (2.2 to 4.0, P = .0031). Overall confidence in providing HDR brachytherapy services safely and teaching other providers increased from 3.1 to 3.8 and 3.0 to 3.5, respectively.ConclusionA 12-week, low-cost telehealth training program on HDR brachytherapy improved confidence in treatment delivery and teaching for clinicians in 10 participating LMICs

Impact of High-Dose-Rate Brachytherapy Training via Telehealth in Low- and Middle-Income Countries

PurposeOur objective was to demonstrate the efficacy of a telehealth training course on high-dose-rate (HDR) brachytherapy for gynecologic cancer treatment for clinicians in low- and middle-income countries (LMICs).MethodsA 12-week course consisting of 16 live video sessions was offered to 10 cancer centers in the Middle East, Africa, and Nepal. A total of 46 participants joined the course, and 22 participants, on average, attended each session. Radiation oncologists and medical physicists from 11 US and international institutions prepared and provided lectures for each topic covered in the course. Confidence surveys of 15 practical competencies were administered to participants before and after the course. Competencies focused on HDR commissioning, shielding, treatment planning, radiobiology, and applicators. Pre- and post-program surveys of provider confidence, measured by 5-point Likert scale, were administered and compared.ResultsForty-six participants, including seven chief medical physicists, 16 senior medical physicists, five radiation oncologists, and three dosimetrists, representing nine countries attended education sessions. Reported confidence scores, both aggregate and paired, demonstrated increases in confidence in all 15 competencies. Post-curriculum score improvement was statistically significant (P < .05) for paired respondents in 11 of 15 domains. Absolute improvements were largest for confidence in applicator commissioning (2.3 to 3.8, P = .009), treatment planning system commissioning (2.2 to 3.9, P = .0055), and commissioning an HDR machine (2.2 to 4.0, P = .0031). Overall confidence in providing HDR brachytherapy services safely and teaching other providers increased from 3.1 to 3.8 and 3.0 to 3.5, respectively.ConclusionA 12-week, low-cost telehealth training program on HDR brachytherapy improved confidence in treatment delivery and teaching for clinicians in 10 participating LMICs