{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,1]],"date-time":"2026-08-01T00:45:14Z","timestamp":1785545114054,"version":"3.56.0"},"reference-count":28,"publisher":"JMIR Publications Inc.","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JMIR Cancer"],"abstract":"Abstract<\/jats:title>\n \n Background<\/jats:title>\n \n Breast cancer is prevalent among females in the United States. Nonmetastatic disease is treated by partial or complete mastectomy procedures. However, the rates of those procedures vary across practices. Generating real-world evidence on breast cancer surgery could lead to improved and consistent practices. We investigated the quality of data from the\n All of Us<\/jats:italic>\n Research Program, which is a precision medicine initiative that collected real-world electronic health care data from different sites in the United States both retrospectively and prospectively to participant enrollment.\n <\/jats:p>\n <\/jats:sec>\n \n Objective<\/jats:title>\n \n The paper aims to determine whether\n All of Us<\/jats:italic>\n data are fit for use in generating real-world evidence on mastectomy procedures.\n <\/jats:p>\n <\/jats:sec>\n \n Methods<\/jats:title>\n \n Our mastectomy phenotype consisted of adult female participants who had CPT4 (Current Procedural Terminology 4),\n ICD-9<\/jats:italic>\n (\n International Classification of Diseases, Ninth Revision<\/jats:italic>\n ) procedure, or SNOMED (Systematized Nomenclature of Medicine) codes for a partial or complete mastectomy procedure that mapped to Observational Medical Outcomes Partnership Common Data Model concepts. We evaluated the phenotype with a data quality dimensions (DQD) framework that consisted of 5 elements: conformance, completeness, concordance, plausibility, and temporality. Also, we applied a previously developed DQD checklist to evaluate concept selection, internal verification, and external validation for each dimension. We compared the DQD of our cohort to a control group of adult women who did not have a mastectomy procedure. Our subgroup analysis compared partial to complete mastectomy procedure phenotypes.\n <\/jats:p>\n <\/jats:sec>\n \n Results<\/jats:title>\n \n There were 4175 female participants aged 18 years or older in the partial or complete mastectomy cohort, and 168,226 participants in the control cohort. The geospatial distribution of our cohort varied across states. For example, our cohort consisted of 835 (20%) participants from Massachusetts, but multiple other states contributed fewer than 20 participants. We compared the sociodemographic characteristics of the partial (n=2607) and complete (n=1568) mastectomy subgroups. Those groups differed in the distribution of age at procedure (\n P<\/jats:italic>\n <.001), education (\n P<\/jats:italic>\n =.02), and income (\n P<\/jats:italic>\n =.03) levels, as per\n \n \n \u03c7\n 2<\/jats:sup>\n <\/jats:italic>\n analysis. A total of 367 (9.9%) participants in our cohort had overlapping CPT4 and SNOMED codes for a mastectomy, and 63 (1.5%) had overlapping\n ICD-9<\/jats:italic>\n procedure and SNOMED codes. The prevalence of breast cancer\u2013related concepts was higher in our cohort compared to the control group (\n P<\/jats:italic>\n <.001). In both the partial and complete mastectomy subgroups, the correlations among concepts were consistent with the clinical management of breast cancer. The median time between biopsy and mastectomy was 5.5 (IQR 3.5-11.2) weeks. Although we did not have external benchmark comparisons, we were able to evaluate concept selection and internal verification for all domains.\n <\/jats:p>\n <\/jats:sec>\n \n Conclusions<\/jats:title>\n \n Our data quality framework was implemented successfully on a mastectomy phenotype. Our systematic approach identified data missingness. Moreover, the framework allowed us to differentiate breast-conserving therapy and complete mastectomy subgroups in the\n All of Us<\/jats:italic>\n data.\n <\/jats:p>\n <\/jats:sec>","DOI":"10.2196\/59298","type":"journal-article","created":{"date-parts":[[2024,12,30]],"date-time":"2024-12-30T15:42:32Z","timestamp":1735573352000},"page":"e59298-e59298","source":"Crossref","is-referenced-by-count":4,"title":["Assessing the Data Quality Dimensions of Partial and Complete Mastectomy Cohorts in the\n All of Us<\/i>\n Research Program: Cross-Sectional Study"],"prefix":"10.2196","volume":"11","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-2869-0237","authenticated-orcid":false,"given":"Matthew","family":"Spotnitz","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7626-6540","authenticated-orcid":false,"given":"John","family":"Giannini","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3598-0999","authenticated-orcid":false,"given":"Yechiam","family":"Ostchega","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3317-9804","authenticated-orcid":false,"given":"Stephanie L","family":"Goff","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0006-5541-0287","authenticated-orcid":false,"given":"Lakshmi Priya","family":"Anandan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0039-0470","authenticated-orcid":false,"given":"Emily","family":"Clark","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2130-6263","authenticated-orcid":false,"given":"Tamara R","family":"Litwin","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3025-6990","authenticated-orcid":false,"given":"Lew","family":"Berman","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1010","published-online":{"date-parts":[[2025,3,11]]},"reference":[{"issue":"6","key":"R1","doi-asserted-by":"publisher","first-page":"394","DOI":"10.3322\/caac.21492","article-title":"Global cancer statistics 2018: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries","volume":"68","author":"Bray","journal-title":"CA Cancer J Clin"},{"key":"R2","unstructured":"National Cancer Institute Surveillance, Epidemiology, and End Results Program cancer stat facts: female breast cancer. National Institutes of Health. URL: https:\/\/seer.cancer.gov\/statfacts\/html\/breast.html [Accessed 30-12-2024]"},{"issue":"4","key":"R3","doi-asserted-by":"publisher","first-page":"474","DOI":"10.1097\/01.SLA.0000059969.64262.87","article-title":"Rating the risk factors for breast cancer","volume":"237","author":"Singletary","journal-title":"Ann Surg"},{"issue":"2","key":"R4","doi-asserted-by":"publisher","first-page":"411","DOI":"10.1016\/j.suc.2012.12.006","article-title":"Surgical management of the breast: breast conservation therapy and mastectomy","volume":"93","author":"McLaughlin","journal-title":"Surg Clin North Am"},{"issue":"16","key":"R5","doi-asserted-by":"publisher","first-page":"1233","DOI":"10.1056\/NEJMoa022152","article-title":"Twenty-year follow-up of a randomized trial comparing total mastectomy, lumpectomy, and lumpectomy plus irradiation for the treatment of invasive breast cancer","volume":"347","author":"Fisher","journal-title":"N Engl J Med"},{"issue":"1","key":"R6","doi-asserted-by":"publisher","first-page":"6","DOI":"10.1056\/NEJM198107023050102","article-title":"Comparing radical mastectomy with quadrantectomy, axillary dissection, and radiotherapy in patients with small cancers of the breast","volume":"305","author":"Veronesi","journal-title":"N Engl J Med"},{"issue":"5","key":"R7","doi-asserted-by":"publisher","first-page":"1558","DOI":"10.1200\/JCO.1996.14.5.1558","article-title":"Conservative treatment versus mastectomy in early breast cancer: patterns of failure with 15 years of follow-up data. Institut Gustave-Roussy Breast Cancer Group","volume":"14","author":"Arriagada","journal-title":"J Clin Oncol"},{"issue":"4","key":"R8","doi-asserted-by":"publisher","first-page":"412","DOI":"10.1016\/S1470-2045(12)70042-6","article-title":"Breast conserving therapy versus mastectomy for stage I-II breast cancer: 20 year follow-up of the EORTC 10801 phase 3 randomised trial","volume":"13","author":"Liti\u00e8re","journal-title":"Lancet Oncol"},{"issue":"4","key":"R9","doi-asserted-by":"publisher","first-page":"e539","DOI":"10.1016\/j.clbc.2017.12.013","article-title":"Review of factors influencing women\u2019s choice of mastectomy versus breast conserving therapy in early stage breast cancer: a systematic review","volume":"18","author":"Gu","journal-title":"Clin Breast Cancer"},{"issue":"11","key":"R10","doi-asserted-by":"publisher","first-page":"2123","DOI":"10.1038\/sj.bjc.6601835","article-title":"Predictors of patients\u2019 choices for breast-conserving therapy or mastectomy: a prospective study","volume":"90","author":"Molenaar","journal-title":"Br J Cancer"},{"issue":"7","key":"R11","doi-asserted-by":"publisher","first-page":"668","DOI":"10.1056\/NEJMsr1809937","article-title":"The \u201cAll of Us\u201d Research Program","volume":"381","author":"All of Us Research Program Investigators","journal-title":"N Engl J Med"},{"key":"R12","volume":"216","author":"Hripcsak","journal-title":"Stud Health Technol Inform"},{"issue":"1","key":"R13","doi-asserted-by":"publisher","first-page":"54","DOI":"10.1136\/amiajnl-2011-000376","article-title":"Validation of a common data model for active safety surveillance research","volume":"19","author":"Overhage","journal-title":"J Am Med Inform Assoc"},{"issue":"3","key":"R14","doi-asserted-by":"publisher","first-page":"583","DOI":"10.1093\/jamia\/ocad247","article-title":"OHDSI Standardized Vocabularies \u2013 a large-scale centralized reference ontology for international data harmonization","volume":"31","author":"Reich","journal-title":"J Am Med Inform Assoc"},{"key":"R15","unstructured":"Observational Health Data Sciences and Informatics (OHDSI) Network, ATHENA Search Engine. URL: https:\/\/athena.ohdsi.org\/search-terms\/start [Accessed 30-12-2024]"},{"issue":"1","key":"R16","doi-asserted-by":"publisher","first-page":"1244","DOI":"10.13063\/2327-9214.1244","article-title":"A harmonized data quality assessment terminology and framework for the secondary use of electronic health record data","volume":"4","author":"Kahn","journal-title":"EGEMS (Wash DC)"},{"key":"R17","doi-asserted-by":"publisher","DOI":"10.1200\/CCI.24.00052","article-title":"Application of a data quality framework to ductal carcinoma in situ using electronic health record data from the All of Us Research Program","volume":"8","author":"Berman","journal-title":"JCO Clin Cancer Inform"},{"issue":"2","key":"R18","doi-asserted-by":"publisher","first-page":"137","DOI":"10.1016\/j.stamet.2005.08.005","article-title":"Data quality: a statistical perspective","volume":"3","author":"Karr","journal-title":"Stat Methodol"},{"issue":"3","key":"R19","doi-asserted-by":"publisher","first-page":"288","DOI":"10.1001\/jama.2018.19323","article-title":"Breast cancer treatment: a review","volume":"321","author":"Waks","journal-title":"J Am Med Assoc"},{"key":"R20","doi-asserted-by":"publisher","DOI":"10.1016\/j.ejso.2009.01.008","article-title":"Surgical guidelines for the management of breast cancer","volume":"35 Suppl 1","author":"Association of Breast Surgery at Baso 2009","journal-title":"Eur J Surg Oncol"},{"key":"R21","unstructured":"The basics survey. All of Us Research Program. URL: https:\/\/databrowser.researchallofus.org\/survey\/the-basics [Accessed 30-12-2024]"},{"key":"R22","unstructured":"All of Us Institutional Review Board (IRB). All of Us Research Program. URL: https:\/\/allofus.nih.gov\/about\/who-we-are\/institutional-review-board-irb-of-all-of-us-research-program [Accessed 30-12-2024]"},{"key":"R23","unstructured":"The All of Us consent process. All of Us Research Program. URL: https:\/\/allofus.nih.gov\/about\/protocol\/all-us-consent-process [Accessed 30-12-2024]"},{"key":"R24","unstructured":"Precision Medicine Initiative: privacy and trust principles. All of Us Research Program. URL: https:\/\/allofus.nih.gov\/protecting-data-and-privacy\/precision-medicine-initiative-privacy-and-trust-principles [Accessed 30-12-2024]"},{"key":"R25","unstructured":"What participants receive. All of Us Research Program. URL: https:\/\/www.joinallofus.org\/what-participants-receive [Accessed 30-12-2024]"},{"key":"R26","unstructured":"Welcome to the All of Us Research Hub. All of Us Research Program. URL: https:\/\/www.researchallofus.org [Accessed 30-12-2024]"},{"issue":"1","key":"R27","doi-asserted-by":"publisher","first-page":"9","DOI":"10.1001\/jamasurg.2014.2895","article-title":"Nationwide trends in mastectomy for early-stage breast cancer","volume":"150","author":"Kummerow","journal-title":"JAMA Surg"},{"issue":"8","key":"R28","doi-asserted-by":"publisher","first-page":"1733","DOI":"10.1002\/cncr.21353","article-title":"In situ male breast carcinoma in the Surveillance, Epidemiology, and End Results database of the National Cancer Institute","volume":"104","author":"Anderson","journal-title":"Cancer"}],"container-title":["JMIR Cancer"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/cancer.jmir.org\/2025\/1\/e59298","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,7,31]],"date-time":"2026-07-31T22:32:33Z","timestamp":1785537153000},"score":1,"resource":{"primary":{"URL":"https:\/\/cancer.jmir.org\/2025\/1\/e59298"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,3,11]]},"references-count":28,"URL":"https:\/\/doi.org\/10.2196\/59298","relation":{},"ISSN":["2369-1999"],"issn-type":[{"value":"2369-1999","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,3,11]]},"article-number":"v11i6e59298"}}