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BackgroundEfficiently sharing health data produced during standard care could dramatically accelerate progress in cancer treatments, but various barriers make this difficult. Not sharing these data to ensure patient privacy is at the cost of little to no learning from real-world data produced during cancer care. Furthermore, recent research has demonstrated a willingness of patients with cancer to share their treatment experiences to fuel research, despite potential risks to privacy. ObjectiveThe objective of this study was to design, pilot, and release a decentralized, scalable, efficient, economical, and secure strategy for the dissemination of deidentified clinical and genomic data with a focus on late-stage cancer. MethodsWe created and piloted a blockchain-authenticated system to enable secure sharing of deidentified patient data derived from standard of care imaging, genomic testing, and electronic health records (EHRs), called the Cancer Gene Trust (CGT). We prospectively consented and collected data for a pilot cohort (N=18), which we uploaded to the CGT. EHR data were extracted from both a hospital cancer registry and a common data model (CDM) format to identify optimal data extraction and dissemination practices. Specifically, we scored and compared the level of completeness between two EHR data extraction formats against the gold standard source documentation for patients with available data (n=17). ResultsAlthough the total completeness scores were greater for the registry reports than those for the CDM, this difference was not statistically significant. We did find that some specific data fields, such as histology site, were better captured using the registry reports, which can be used to improve the continually adapting CDM. In terms of the overall pilot study, we found that CGT enables rapid integration of real-world data of patients with cancer in a more clinically useful time frame. We also developed an open-source Web application to allow users to seamlessly search, browse, explore, and download CGT data. ConclusionsOur pilot demonstrates the willingness of patients with cancer to participate in data sharing and how blockchain-enabled structures can maintain relationships between individual data elements while preserving patient privacy, empowering findings by third-party researchers and clinicians. We demonstrate the feasibility of CGT as a framework to share health data trapped in silos to further cancer research. Further studies to optimize data representation, stream, and integrity are required.

The delivery of integrated care requires the establishment of effective professional relationships that foster collaborative working across health systems. Evidence for how to prepare practitioners to work in those settings is limited. By exploring an innovative postgraduate Programme for Integrated Child Health (PICH) this article highlights the conditions by which effective collaboration can be encouraged. Our qualitative evaluation of PICH involved one-to-one semi-structured interviews with 23 postgraduate general practice and paediatric trainees and their mentors. We analysed the data using the concept of the 'third space', where multiple discourses between individuals with diverse professional backgrounds occur, enabling creative exploration of tensions inherent in new ways of working in order to identify enablers and barriers to collaboration. Our analysis identified three themes that enabled collaboration: effective communication, boundary work and educational spaces; and four themes that were barriers: traditional hierarchical professional identities, curriculum design, financial systems and workplace spaces. PICH demonstrated the value of educational spaces and their role in enabling collaborative practice, as participants explored their professional identities and those of other disciplines. Structural factors in the workplace which inhibit collaborative practice were also evident. We conclude by proposing a model for collaborative learning in third spaces based upon the recognition that, while educational programmes alone will not lead to change, they have the potential to inform the development of productive workplace spaces that will be required if collaborative practice in healthcare is to become a reality.

BACKGROUND: Biliary cancers are rare, and few reported cases of brain metastases from primary biliary cancers exist, especially describing patients in the United States. This report assesses the proportion and incidence of brain metastases arising from primary biliary cancers [cholangiocarcinoma (CCA) and gallbladder cancer] at Stanford University and the University of California, San Francisco, describes clinical characteristics, and provides a case series. METHODS: We queried 3 clinical databases at Stanford and the University of California, San Francisco to retrospectively identify and review the charts of 15 patients with brain metastases from primary biliary cancers occurring between 1990 to 2020. RESULTS: Among patients with brain metastases analyzed at Stanford (3,585), 6 had a primary biliary cancer, representing 0.17% of all brain metastases. Among biliary cancer patients at the University of California, San Francisco (1,055), 9 had brain metastases, representing an incidence in biliary cancer of 0.85%. A total of 15 biliary cancer patients with brain metastases were identified at the two institutions. Thirteen out of 15 patients (86.7%, 95% CI: 59.5-98.3) were female. The median overall survival from primary biliary cancer diagnosis was 214 days (95% CI: 71.69-336.82 days) and subsequent OS from the time of brain metastasis diagnosis was 57 days (95% CI: 13.43-120.64 days). Death within 90 days of brain metastasis diagnosis occurred in 66.67% of patients (95% CI: 38.38-88.17). CONCLUSIONS: Brain metastases from primary biliary cancers are rare, with limited survival once diagnosed. This report can aid health care providers in caring for patients with brain metastases from primary biliary cancers.

Enrollment in metastatic breast cancer trials usually requires measurable lesions, but patients with invasive lobular carcinoma (ILC) tend to form diffuse disease. We found that the proportion of patients with metastatic ILC enrolled in clinical trials at our institution was significantly lower than that of patients with invasive ductal carcinoma (IDC). Possible links between requiring measurable disease and decreased enrollment of ILC patients require further study to ensure equitable trial access.

Background: Prior studies evaluating thyroid fine needle aspiration biopsies (FNABs) have limited the calculation of risk of malignancy (ROM) to cytologic specimens with corresponding histologic specimens, and clinical follow-up for those patients who do not undergo immediate surgery has been largely disregarded. Moreover, there is marked variability in how researchers have approached thyroid FNAB statistical analyses. This study addresses the urgent need for information from a large cohort of patients with long-term clinical follow-up to more accurately determine the performance of thyroid FNAB and ROM for each diagnostic category. Methods: A retrospective review of the University of California, San Francisco (UCSF), pathology database for thyroid FNABs from January 1, 1997, to December 31, 2004, was performed. Diagnoses were coded using the 2017 The Bethesda System for Reporting Thyroid Cytopathology (TBSRTC), and patients were matched to both the UCSF cancer registry and California Cancer Registry. Data were analyzed using the Kaplan-Meier method, and stratified by TBSRTC diagnostic category. Kaplan-Meier curves were used to estimate incidence rates of malignancy, stratified by FNAB category. Cox proportional hazards models were used to determine the instantaneous ROM. Results: Initial FNABs from 2207 patients were included. Median follow-up period after the first thyroid FNAB was 13.9 years (range: 10.5-18.4 years). During follow-up, there were 279 confirmed diagnoses of thyroid malignancy. Estimates derived from Kaplan-Meier curves demonstrated that the risk of having a thyroid malignancy was low for nondiagnostic and benign categories, intermediate for atypia of undetermined significance (AUS), follicular lesion of undetermined significance (FLUS), AUS/FLUS combined, and follicular neoplasm, and high for suspicious and malignant categories. A total of 52/1575 false-negative cases (3.2%) were identified. Excluding papillary microcarcinomas, the false-negative rate was 1.5% (23/1575). No patients with a false-negative diagnosis died of thyroid cancer during the follow-up period. Conclusions: Asymptomatic patients with low-risk clinical and radiologic features and initially benign or unsatisfactory biopsy are unlikely to develop thyroid malignancy and highly unlikely to die of thyroid cancer. FNAB is highly accurate in detecting malignancy. Additional studies evaluating similar large data sets after the adoption of TBSRTC and the integration of molecular testing are needed.

BackgroundAlthough gemcitabine plus platinum chemotherapy is the established first-line regimen for advanced biliary cancer (ABC), there is no standard second-line therapy. This study evaluated current practice and outcomes for second-line chemotherapy in patients with ABC across 3 US academic medical centers.MethodsInstitutional registries were reviewed to identify patients who had received second-line chemotherapy for ABC from April 2010 to March 2015 along with their demographics, diagnoses and staging, treatment histories, and clinical outcomes. Overall survival from the initiation of second-line chemotherapy (OS2) was estimated with Kaplan-Meier methods.ResultsThis study identified 198 patients with cholangiocarcinoma (intrahepatic [61.1%] or extrahepatic [14.1%]) or gallbladder carcinoma (24.8%); 52% received at least 3 lines of systemic chemotherapy. The median OS2 was 11 months (95% confidence interval [CI], 8.8-13.1 months). The median OS2 for patients with intrahepatic cholangiocarcinoma was 13.4 months (95% CI, 10.7-17.8 months), which was longer than that for patients with extrahepatic cholangiocarcinoma (6.8 months; 95% CI, 5-10.6 months) or gallbladder carcinoma (9.4 months; 95% CI, 7.2-12.3 months; P = .018). The median time to second-line treatment failure was 2.2 months (95% CI, 1.8-2.7 months), and it was similar across tumor locations (P = .60).ConclusionsIn this large cohort of patients with ABC treated across 3 academic medical centers after the failure of first-line chemotherapy, the time to treatment failure on standard therapies was short, although the median OS2 was longer than has been reported previously, and more than half of the patients received additional lines of treatment. This multicenter collaboration represents the largest cohort studied to date of second-line chemotherapy for ABC and provides a contemporary benchmark for future clinical trials.

BackgroundA lack of diversity among clinical trial (CT) participants remains a critical problem. Few studies have examined recruitment variability in cancer treatment CTs by cancer type. Given the increasing organ-specific specialization of oncologic care, an understanding of this variability may affect institutional recruitment practices.MethodsThis study examines three data sources from 2010 through 2014. The analyzed sample includes 3,580 CT participants identified in the institutional Clinical Trials Management System (CTMS) database and 20,305 incident cases of invasive cancer within a Comprehensive Cancer Center (CCC) institutional catchment area. A total of 341,114 incident cases of primary invasive cancer were identified through the California Cancer Registry (CCR). The primary study measurements were sociodemographic characteristics of the three populations (age, sex, race/ethnicity, and health insurance).ResultsRacial/ethnic disparities were observed, with more incident cases of Whites seen in cancer center (68%) and enrolled in CTs (72%) compared to incident cases in catchment area (67%) (p

This article aims to provide insight into the daily experiences and struggles of APE teachers during the COVID-19 pandemic from across the nation. More specifically, six adapted physical educators from across the nation have contributed to this article, sharing their perspectives and teaching experiences, including strategies used during the COVID-19 pandemic. The article describes challenges and successes they have experienced while conducting their responsibilities, including the following: (1) monitoring and implementing individualized education programs; and (2) writing and monitoring goals and objectives.

The incidence and patient survival rates of melanoma have increased over the last several decades, with a growing population of patients who develop multiple primary melanomas (MPMs). To determine risk factors for developing MPMs and compare the survival of patients with MPMs to those with single primary melanomas, a prospective, multidisciplinary database of patients with melanoma at a single tertiary care institution was retrospectively reviewed. From 1985 to 2013, 6,963 patients with single primary melanomas and 305 patients with MPMs were identified. Mean follow-up was 8.3 ± 6.3 years for patients with single primary melanomas and 8.8 ± 5.9 years for patients with MPMs. Risk of developing multiple melanomas increased with age at diagnosis of first melanoma (hazard ratio [HR] = 1.20 for a 10-year increase in age, 95% confidence interval [CI] = 1.11-1.29, P

BackgroundThe optimal therapeutic approach for patients with AIDS-related primary central nervous system lymphoma (AR-PCNSL) remains undefined. While its incidence declined substantially with combination antiretroviral therapy (cART), AR-PCNSL remains a highly aggressive neoplasm for which whole brain radiotherapy (WBRT) is considered a standard first-line intervention.MethodsTo identify therapy-related factors associated with favorable survival, we first retrospectively analyzed outcomes of AR-PCNSL patients treated at San Francisco General Hospital, a public hospital with a long history of dedicated care for patients with HIV and AIDS-related malignancies. Results were validated in a retrospective, multicenter analysis that evaluated all newly diagnosed patients with AR-PCNSL treated with cART plus high-dose methotrexate (HD-MTX).ResultsWe provide evidence that CD4+ reconstitution with cART administered during HD-MTX correlates with long-term survival among patients with CD4

The number of children diagnosed with autism is on the rise, and teachers are seldom prepared to teach children with autism in their classes. However, it is possible to successfully include children with autism in general physical education settings by understanding inclusive physical education, individualizing instruction, targeting age-appropriate motor skills, using appropriate teaching strategies, managing challenging behaviors, utilizing unique and novel equipment, developing social interaction skills, and using effective communication methods. Each of these solutions is described with its operational definition, research evidence, and application method. (Contains 1 table.)

BackgroundFibrolamellar carcinoma is a rare and poorly understood malignancy that affects the young in the absence of underlying liver disease. Despite reported small review series, the literature lacks large retrospective studies that may help in understanding this disease.MethodsMedical record review was undertaken for all patients histopathologically diagnosed with fibrolamellar carcinoma, seen at Memorial Sloan-Kettering Cancer Center, the University of California San Francisco, and Johns Hopkins Hospital from 1986 to 2011. Demographic, clinical, pathologic, and treatment data were recorded. Overall survival was estimated by using Kaplan-Meier methods. The impact of different clinicopathologic variables on survival was assessed with Cox regression models.ResultsNinety-five patients were identified. Median age was 22 years, 86% were Caucasian, and 50% presented with stage IV disease. There were more females than males (58% vs. 42%). Seventy-seven percent of the patients underwent surgical resection and/or liver transplantation; of these 31.5% received perioperative therapy. Patients with unresectable disease, including 8 patients treated in clinical trials, were treated with chemotherapy, occasionally given with interferon or biologic agents. Ten patients received sorafenib, and 7 received best supportive care. Median survival was 6.7 years. Factors significantly associated with poor survival were female sex, advanced stage, lymph node metastases, macrovascular invasion, and unresectable disease.ConclusionsThe clinicopathologic characteristics and survival outcomes from this dataset are consistent with those reported in the literature. Surgical resection and disease extent were confirmed as important predictors of survival. The possibility of a negative association between female sex and prognosis could represent a clue as to future therapeutic strategies.

Over the past 30 years, there has been significant progress in the educational advancement of women in the United States and New England. Nationally, the percentage of adult women with four-year college degrees increased from 8 percent in 1970 to 24 percent in 2000. Women narrowed the gap with men in college completion, as the female-to-male ratio in percentages of Americans with four-year college degrees went from below 60 percent to 85 percent. Yet women's progress in higher education has not translated into proportionate economic advancement in the workplace. In New England, women earn a low of 69 cents on the men's dollar in New Hampshire to a high of 78 cents in Vermont. All six New England states have female-to-male education ratios at least 3 percentage points above the U.S. average. But only two--Vermont and Massachusetts--have female-to-male earnings ratios 3 percentage points above the U.S. average. In all states except Massachusetts, the "return to education" ratio--as measured by the full-time working female-to-male earnings ratio divided by the full-time working female-to-male education ratio--is below the U.S. average of 86 percent. In other words, the economic returns to a college degree for women relative to men in New England is below the U.S. average. This article discusses why this economic disparity remains so pronounced even with the significant advancement of female students in higher education. In addition, it suggests how institutions of higher education might advance the economic status of women. (Contains 3 figures.)

Abstract Phenomenon: In 2012, the World Federation for Medical Education (WFME) established a recognition programme to evaluate medical school regulatory agencies across the world, in response to a new U.S. accreditation policy. Given the predominantly Western origins and Eastern impacts of the WFME programme, this article deconstructs tensions in the programme using postcolonial theory. Approach: Critical discourse analysis examines the intersections of language, knowledge, and power relations to highlight what can or cannot be said about a topic. We employed it to delineate the dominant discourse underpinning the WFME recognition programme. We drew on the theoretical devices of Edward Said, whose work is foundational in postcolonial thinking but has not been widely used in medical education scholarship to date. An archive of literature about the WFME recognition programme dating back to 2003, when WFME first released global standards for medical education, was analyzed. Findings: In the globalization of medical school regulation, the discourse of modernization can be conceptualized as a means of holding knowledge and power in the West, and enacting this power on those in the East, playing on fears of marginalization in the event of non-engagement. The discourse allows these practices to be presented in an honorable and heroic way. Insights: By uncovering the representation of the WFME recognition programme as being modern and modernizing, this article explores how such conceptualisations can close off debate and scrutiny, and proposes further examination of this programme through a lens that recognizes the inherent inequities and geopolitical power differentials that it operates within. [ABSTRACT FROM AUTHOR]

A program titled the "Superintendents' Institute" organized by the Harris County Department of Education (Texas), Rice University, and Compaq Computer Corporation provides a forum for public school leaders to discuss leadership and major decision making in integrating technology into all school levels. (MLF)

The real-life drama 25 years ago when Apollo 13 was rescued through a collaborative team of colleagues provides a model for changes in many public schools. In Texas, the state code specifies that site-based decision making address planning, budgeting, curriculum staffing patterns, staff development, and school organization. (MLF)

Education for the Energy Industry is an innovative, collaborative program for grades 4-12 planned for the Aldine (Texas) Independent School District's magnet schools in math, science, and the arts. Assisted by Rice University and major oil companies, the program allows students to use their knowledge to solve industry-related problems and apply transferable skills like teamwork and conflict resolution. (MLH)

Three children (ages 10-13) with moderate mental retardation were taught, in a triad, to perform chained snack preparation tasks, with each student being directly taught one task and the other two observing. Results indicated that each student learned the skill taught directly and nearly all of the steps of the chains observed. (Author/JDD)