The Standard Health Record: What We’ve Accomplished in Year 1

Some of you must be wondering – is MITRE’s Standard Health Record more than just a fanciful idea? I want to quickly summarize the top 10 things we’ve accomplished since the project launched a little more than a year ago:

  1. We completed a landscape survey of other countries and historical attempts to standardize health records. We found that out of the 10 countries ranked above the US in overall health system effectiveness in the Commonwealth Fund 2014 report (there were only 11 in the study), nine have some form of standard health record, or are in the process of creating one.
  2. We made the decision to align SHR to the overall health of individuals, as described in the determinants of health.  We created data definitions for physical environment, individual behavior, and social circumstances, factors that account for 68% of the overall health of the population.
  3. We created a domain specific language (DSL) designed to help domain experts capture information requirements, and automatically convert those requirements into formal models, and FHIR profiles. We provisionally call this language “Compositional Approach to Modeling Elements for interOperability,” or CAMEO for short. The code, samples, and other information is found on Github.
  4. Using CAMEO and associated tooling, we created a  SHR-on-FHIR Implementation Guide.  The SHR-on-FHIR IG currently contains over 200 FHIR profiles, making it the largest, most comprehensive, and integrated set of FHIR profiles yet created.
  5.  In collaboration with Dana-Farber Cancer Institute, the American Society of Clinical Oncology, the Alliance for Clinical Trails in Oncology, and Brigham and Woman’s Hospital, we began a focused effort to apply the SHR approach to breast cancer. This oncology namespace in SHR now includes FHIR profiles for initial breast cancer diagnosis, cancer staging, histologic grading, receptor status, tumor size, metastasis, aggressiveness, genetic variants, progression, and toxicity.
  6. My MITRE colleague Steve Bratt and I were on the organizing committee that launched the Clinical Information Interoperability Council (CIIC), an umbrella organization guiding clinical societies toward an integrated approach to data standardization.
  7. With help from Richard Esmond, we founded a new HL7 group, the Cancer Diagnosis, Treatment and Research (Cancer DTR), to bring together a larger community of stakeholders to work on standardizing cancer data and bridging gaps between clinical treatment, disease registries, and clinical trials. This group has been convened both through HL7 and under the larger CIIC umbrella.
  8. To realize the vision of 100x faster standards creation, we’ve begun to build an integrated ecosystem comprised of rapid data standards specification, clinician-facing data entry, creating test patients, populating FHIR servers, and testing exchanges, to vastly accelerate the process of standards development and deployment. In addition to CAMEO, the system uses MITRE’s synthetic data generator, Synthea, an advanced clinical user interface, Flux, and our FHIR testing software, Crucible.
  9. We recently completed a detailed review of CIMI, to determine how SHR and CIMI might align or merge. We have created our own proof-of-concept, preliminary CIMI-on-FHIR Implementation Guide, for comparison purposes. The ideal outcome would be a merger that combines the best features of each.
  10. We open sourced everything, and you can find all the code and data definitions on Github.

About Mark Kramer

Mark Kramer, Ph.D., is Group Leader for Healthcare Standards and Interoperability at MITRE Corporation. Mark led the standardization of hData, the first lightweight REST methodology for healthcare data exchange, now a normative standard of HL7. With HL7, ONC, and CMS, Mark focused on developing FHIR profiles unifying standards for clinical quality measures and decision support. Mark has also worked the US Department of Veterans Affairs on interoperable healthcare information exchange, and helped the DOD transfer radiological images of wounded warriors from Afghanistan and Iraq to regional hospitals. Prior to joining MITRE, Mark was Chief Technology Officer at Gensym Corporation, a leading provider of AI software, VP of Engineering at InterOPS, a network management company, CTO of Light Pharma, provider of capability improvement software and services to the pharmaceutical industry, and Associate Professor of Chemical Engineering at Massachusetts Institute of Technology.
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