Collaborating on Data, Science, and Infrastructure: The 20-Year Journey of the
            Cancer Research Network

Doria–Rose, V. Paul; Greenlee, Robert T.; Buist, Diana S.M.; Miglioretti, Diana L.; Corley, Douglas A.; Brown, Jeffrey S.; Clancy, Heather; Tuzzio, Leah; Moy, Lisa M.; Hornbrook, Mark C.; Brown, Martin L.; Ritzwoller, Debra P.; Kushi, Lawrence H.; Greene, Sarah M.

doi:10.5334/egems.273

Cited by 6 publications

(3 citation statements)

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“…The Canadian data sets were linked using unique encoded identifiers . Established quality assurance methods, including targeted medical record review within and across the study sites, were used to ensure complete capture of imaging use …”

Section: Methodsmentioning

confidence: 99%

Trends in Medical Imaging During Pregnancy in the United States and Ontario, Canada, 1996 to 2016

et al. 2019

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IMPORTANCE The use of medical imaging has sharply increased over the last 2 decades. Imaging rates during pregnancy have not been quantified in a large, multisite study setting. OBJECTIVE To evaluate patterns of medical imaging during pregnancy. DESIGN, SETTING, AND PARTICIPANTS A retrospective cohort study was performed at 6 US integrated health care systems and in Ontario, Canada. Participants included pregnant women who gave birth to a live neonate of at least 24 weeks' gestation between January 1, 1996, and December 31, 2016, and who were enrolled in the health care system for the entire pregnancy. EXPOSURES Computed tomography (CT), magnetic resonance imaging, conventional radiography, angiography and fluoroscopy, and nuclear medicine. MAIN OUTCOMES AND MEASURES Imaging rates per pregnancy stratified by country and year of child's birth. RESULTS A total of 3 497 603 pregnancies in 2 211 789 women were included. Overall, 26% of pregnancies were from US sites. Most (92%) were in women aged 20 to 39 years, and 85% resulted in full-term births. Computed tomography imaging rates in the United States increased from 2.0 examinations/1000 pregnancies in 1996 to 11.4/1000 pregnancies in 2007, remained stable through 2010, and decreased to 9.3/1000 pregnancies by 2016, for an overall increase of 3.7-fold. Computed tomography rates in Ontario, Canada, increased more gradually by 2.0-fold, from 2.0/1000 pregnancies in 1996 to 6.2/1000 pregnancies in 2016, which was 33% lower than in the United States. Overall, 5.3% of pregnant women in US sites and 3.6% in Ontario underwent imaging with ionizing radiation, and 0.8% of women at US sites and 0.4% in Ontario underwent CT. Magnetic

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Section: Methodsmentioning

confidence: 99%

Trends in Medical Imaging During Pregnancy in the United States and Ontario, Canada, 1996 to 2016

et al. 2019

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“…Across this literature, there is an emphasis on network level technical infrastructures, governance and regulatory components, collaboration, and benefits to the science. 7,8,9,10,11,12,13 An entire issue of the Journal of the American Medical Informatics Association (July 2014) was dedicated to describing the development of CDRNs within PCORnet® . 14,15,16,17,18,19,20,21,22,23,24 Across these publications, the heterogeneity of collaborating organizations is noted as a strength of the network, and the general methods and technologies used to implement queries across the network are described.…”

Section: Federated Research and Data Networkmentioning

confidence: 99%

“…While PCORnet was one of the early FR&DNs in health care, a growing body of literature describes other federated research networks in health care that also leverage federated data networks. Across this literature, there is an emphasis on network-level technical infrastructures, governance and regulatory components, collaboration, and benefits to the science [7][8][9][10][11][12][13]. An entire issue of the Journal of the American Medical Informatics Association (July 2014) was dedicated to describing the development of CDRNs within PCORnet® [14][15][16][17][18][19][20][21][22][23][24].…”

Section: Federated Research and Data Networkmentioning

confidence: 99%

Infrastructuring an organizational node for a federated research and data network: A case study from a sociotechnical perspective

Harris

Ferguson

Luo³

2021

J. Clin. Trans. Sci.

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Translational Health Disparities Research in a Data-Rich World

et al. 2019

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Background: Despite decades of research and interventions, significant health disparities persist. Seventeen years is the estimated time to translate scientific discoveries into public health action. This Narrative Review argues that the translation process could be accelerated if representative data were gathered and used in more innovative and efficient ways. Methods: The National Institute on Minority Health and Health Disparities led a multiyear visioning process to identify research opportunities designed to frame the next decade of research and actions to improve minority health and reduce health disparities. ''Big data'' was identified as a research opportunity and experts collaborated on a systematic vision of how to use big data both to improve the granularity of information for place-based study and to efficiently translate health disparities research into improved population health. This Narrative Review is the result of that collaboration. Results: Big data could enhance the process of translating scientific findings into reduced health disparities by contributing information at fine spatial and temporal scales suited to interventions. In addition, big data could fill pressing needs for health care system, genomic, and social determinant data to understand mechanisms. Finally, big data could lead to appropriately personalized health care for demographic groups. Rich new resources, including social media, electronic health records, sensor information from digital devices, and crowd-sourced and citizen-collected data, have the potential to complement more traditional data from health surveys, administrative data, and investigator-initiated registries or cohorts. This Narrative Review argues for a renewed focus on translational research cycles to accomplish this continual assessment. Conclusion: The promise of big data extends from etiology research to the evaluation of large-scale interventions and offers the opportunity to accelerate translation of health disparities studies. This data-rich world for health disparities research, however, will require continual assessment for efficacy, ethical rigor, and potential algorithmic or system bias.

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Collaborating on Data, Science, and Infrastructure: The 20-Year Journey of the Cancer Research Network

Cited by 6 publications

References 64 publications

Trends in Medical Imaging During Pregnancy in the United States and Ontario, Canada, 1996 to 2016

Trends in Medical Imaging During Pregnancy in the United States and Ontario, Canada, 1996 to 2016

Infrastructuring an organizational node for a federated research and data network: A case study from a sociotechnical perspective

Translational Health Disparities Research in a Data-Rich World

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