Building Data Capacity for Patient-Centered Outcomes Research Interim Report 2–Data Standards, Methods, and Policy (2022) / Chapter Skim
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2 Patient-Centered Outcomes Research Data Standards
2 Patient-Centered Outcomes Research Data Standards
Pages 17-32
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From page 17... ...
considers standards to be one of the building blocks of the patient-centered outcomes research (PCOR) infrastructure.
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From page 18... ...
Ultimately, a working group of about 100 experts might be involved in deciding on the definitions of data elements that are needed to answer process questions. The challenges associated with data standards are heightened, Halamka added, when the research goes beyond structured and unstructured clinical data to incorporate other forms of data, such as research data emerging from various "omics" fields (e.g., genomics)
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From page 19... ...
Grannis noted that the patient identity strategy in the United States is evolving based on a recognition that matching patient records from different sources is one of the few remaining large holes in the electronic health data infrastructure. For this reason, Congress charged the Office of the National Coordinator for Health Information Technology with writing a report focused on effective matching methods.
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From page 20... ...
As an example of building on evidencebased research to develop standards, Grannis mentioned a 2019 paper that showed that standardizing address and last name significantly improves matching accuracy.2 This research led to a bipartisan Senate bill calling to address standardization, and work is now in progress on developing a universal standard. Evelyn Gallego, EMI Advisors, discussed her work on the Gravity Project, which focuses on developing consensus-driven data standards to support use and exchange of SDOH within the health care sectors and between the health care sector and other sectors, including research.
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From page 21... ...
The Gravity Project develops data standards to represent patient-level SDOH data documented across four clinical activities: screening, a ssessment/ diagnosis, goal setting, and treatment/interventions. Described as a "public collaborative," the project convenes participants from across the health and human services ecosystem, including clinical provider groups, communitybased organizations, standards development organizations, federal and state government, payers, technology vendors, and others.
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From page 22... ...
This framework emphasizes the value of these data for secondary use by public and private payers, social service providers, public health entities, and researchers. Rachel Richesson, University of Michigan, discussed the concept of a learning health care system, where research influences practice and practice influences research.
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From page 23... ...
• Document names • Nursing, physical therapy, Open mHealth mobile occupational health data interoperability therapy, dietary, standard education • Questions/answers • Coordinated care • Person-controlled HL7 – Learning Health • Fidelity Systems care team; Gender Harmony group Patient Goals and HL7 FHIR Preferences, Outcomes, • Profiles, FHIR and Endpoints Accelerator projects • General and condition specific BPM+ Health (Business • Calculated or Process Management for summary data Healthcare) • Clinical/treatment • Clinical pathways, response interventions, use • Patient-reported cases • Patient-delivered Agency for Healthcare Research and Quality • Outcome Measures Framework SOURCE: Workshop presentation by Rachel Richesson, May 24, 2021.
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From page 24... ...
Patrick Ryan, of both Janssen Research and Development and olumbia University, discussed data standards based on his experiences C with the O bservational Health Data Sciences and Informatics (OHDSI) collaborative.
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From page 25... ...
, data standards to harmonize data structure and enable analytics (e.g., the Observational Medical Outcomes Partnership Common Data Model or OMOP CDM6) , and analytics standards to generate and disseminate evidence (e.g., the Health Analytics Data-to-Evidence Suite or HADES)
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From page 26... ...
, a Clinical Data Research Network funded by the Patient-Centered Outcomes Research Institute. The common data model for LHSNet focuses on structured data typically available in clinical settings, such as demographic information, laboratory values, and ICD-9 and -10 codes.
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From page 27... ...
This includes standardized clinical natural language tools for processing text so that it is interpreted the same way across multiple sites. The typical data elements in computable phenotypes, Vydiswaran said, are structured components such as ICD-9 and -10 codes, Current Procedural Terminology (CPT)
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From page 28... ...
Vydiswaran mentioned his prior work on self-reporting behavior concerning the toxicity of oral anticancer agents in clinical notes.9 In that work, he found that 23.5 percent of the clinical oral anticancer agent toxicity notes were based on telephone encounters. In another study, Vydiswaran and his colleagues are working on extracting patientprovided information on Crohn's disease symptoms, medication response, and adverse events u sing email and telephone notes stored in electronic medical records.
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From page 29... ...
He also agreed with Gallego on the need for testing, and with Halamka and Grannis on ASPE's potential role in community building. Vydiswaran highlighted the need for maintaining analytic tools over the years, by updating documentation to facilitate their use and progress toward eventual standardization.
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From page 30... ...
Participants cautioned against the blunt instrument of regulation, arguing that standards are most likely to be adopted when they bring value, because without a clear purpose and value for the standards, clinician frustration with electronic health records could increase. HHS could play a role in facilitating discussions to prioritize areas where standardization could be most useful and convening activities around topics such as SDOH, where there is a notable lack of standards and a common language.
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From page 31... ...
CONCLUSION 2-2: The Office of the Assistant Secretary for Planning and Evaluation could add significant value in the area of standards for patient-centered outcomes research by • continuing to promote the development of a data infrastructure and an implementation strategy that facilitates the use of standards and access to the data; • convening stakeholder meetings to enhance communication and work toward developing a common language for standards; • facilitating accessibility to the data and collaborations with existing organizations working in this area; and • leading efforts to catalogue and exemplify data standards and analytic standards. The speakers touched on the need for a broad interpretation of standards, to include not only the data but also the methods used to analyze PCOR data.
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From page 32... ...
32 INTERIM REPORT 2 -- DATA STANDARDS, METHODS, AND POLICY CONCLUSION 2-4: An international perspective is an important consideration for the patient-centered outcomes research data infra structure, and the infrastructure focused on standards specifically would benefit from building on work that happens internationally.
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