Building Data Capacity for Patient-Centered Outcomes Research Interim Report 3 - A Comprehensive Ecosystem for PCOR (2022) / Chapter Skim
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4 Clinical Trial Networks and Collaborations
4 Clinical Trial Networks and Collaborations
Pages 43-50
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From page 43... ...
Two additional research bases conduct only cancer control and outcomes research, such as research on symptom science, patient-reported outcomes, and cancer care delivery, through the NCORP with more than 1,000 practices throughout the United States. Carlos described the NCORP as a valuable setting for cancer clinical trials, because 80 percent of cancer patients receive their treatment in community oncology practices.
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From page 44... ...
44 FIGURE 4-1 National Cancer Institute National Clinical Trials Network structure. SOURCE: Workshop presentation by Ruth Carlos, June 14, 2021; CDC, 2021, https://www.cancer.gov/research/infrastructure/ clinical-trials/nctn.
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From page 45... ...
In the area of health equity, capacity could be enhanced by capturing evolving patient-specific insurance design features, capturing ZIP+4 as part of the address information and translating that into measures of structural inequity, and decreasing barriers to data extraction from electronic medical records to be able to obtain data such as allostatic load. Carlos said that the complexity of the data types and location, as well as the need for equity, transparency, and regulatory compliance, underpinned by strong ethical principles in collection, access, and use, can rapidly seem daunting.
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From page 46... ...
Additionally, she said the prevalence of unstructured data in EHRs makes it difficult to use those data for decision support and quality improvement in clinical settings. She noted that current versions of EHRs do not support registries or trials, although they could.
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From page 47... ...
Curtis described PCORnet as a network of eight large clinical research networks that work together to answer clinical questions by using EHR data that are routinely refreshed, curated, and made accessible through a distributed research network. Curtis next discussed some challenges and opportunities for improving the PCOR data ecosystem.
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From page 48... ...
She agreed with prior speakers that multistate coalitions of those states willing to share their Medicaid data for research would be beneficial to facilitate improved access. Curtis argued that she would like to see an efficient and comprehensive PCOR data ecosystem that allowed participants to consent to their health data being used for research and allowed researchers to access all of those data without having to rely on the patient providing consent at multiple sites of care.
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From page 49... ...
offered ideas for simplifying and streamlining the process of collecting clinical data, which could potentially make it easier to accommodate the need to collect additional data for research, if carefully designed to consider the implications for the resulting information. Participants discussed ways of integrating data from sources other than medical records into clinical research studies.
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