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Update mcode_codex.html.erb
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stevebratt authored Sep 19, 2024
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<h3>History 2017-2018</h3>
<p><strong>Origin:</strong> The lucky spark was a chance encounter between former medical colleagues, Dr. Jay Schnitzer and Dr. Monica Bertagnolli, on an airplane in 2017. Bertagnolli was a preeminent cancer surgeon at Brigham and Women’s and was leading the American Society of Clinical Oncology (ASCO) and Alliance for Cancer Trials in Oncology (ACTO). Dr. Schnitzer, was Chief Technology Officer at MITRE, with a growing portfolio of health information technology research.</p>
<p>Drs. Bertagnolli and Schnitzer had been circling around how to achieve a Learning Health System, where caring for every patient enables learning from every patient. Every person with any disease should have access to high-quality care, and also will have the opportunity for their experience to help others in the future. </p>
<p>Drs. Bertagnolli and Schnitzer had also been circling around one of the fundamental challenges to achieving a Learning Health System: Lack of a single standard for collecting and sharing patient data electronically. They organized the first clinical requirements team convened under the auspices of ASCO, co-chaired by Drs. Jim Chen and [NOTE - find name of other co-chair], and composed of respected experts from across the oncology space. The team's mandate was to agree on the first Use Cases (a narrow scope was important), and on a minimal set of data elements to address Use Case requirements. This data dictionary ultimately seeded a new standard for cancer data: the <%= link_to("minimal Common Oncology Data Elements","https://confluence.hl7.org/display/COD/mCODE") %>. It was not long before an increasing number influential and skilled people and organizations joined in.</p>
<p>Drs. Bertagnolli and Schnitzer had also been circling around one of the fundamental challenges to achieving a Learning Health System: Lack of a single standard for collecting and sharing patient data electronically. They organized the first clinical requirements team convened under the auspices of ASCO, co-chaired by Drs. Jim Chen and [NOTE - find name of other co-chair], and composed of respected experts from across the oncology space. The team's mandate was to agree on the first Use Cases (a narrow scope was important), and on a minimal set of data elements to address Use Case requirements. This data dictionary later seeded a new standard for cancer data: the <%= link_to("minimal Common Oncology Data Elements","https://confluence.hl7.org/display/COD/mCODE") %>. </p>
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<h3>Learnings</h3>
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<li>Both – strong links to Federal health agencies.</li>
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<li>Established the need for consensus clinical identification of data requirements for very specific Use Cases.</li>

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<h2 id="first_use_case">First Use Case & Draft Standard</h2>
<h2 id="first_use_case">First Use Case Project & Draft Standard</h2>
<p>(Key Playbook Tracks: <%= link_to("Community Building", "/playbook/community.html") %>, <%= link_to("Use Cases & Planning", "/playbook/use_cases_planning.html") %>, <%= link_to("Standards Development", "/playbook/standards.html") %>)</p>
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<h3>History 2018-2019</h3>
<p>First Use Case: <%= link_to("EHR Endpoints for Cancer Clinical Trials (ICAREdata study)","https://confluence.hl7.org/display/COD/EHR+Endpoints+for+Cancer+Clinical+Trials") %>. This project aimed to capture and share, using the mCODE standard, high quality clinical treatment data within electronic health records (EHRs) that could be used for oncology research.</p>
<p>First Use Case Project: <%= link_to("EHR Endpoints for Cancer Clinical Trials (ICAREdata study)","https://confluence.hl7.org/display/COD/EHR+Endpoints+for+Cancer+Clinical+Trials") %>. The original mCODE clinical team envisioned a small set of Use Cases in its initial work. It was clear that success required executing a project where standardized data collection and sharing in the real world could test that value of the new standard. The ICAREdata project aimed to capture and share, using the mCODE standard, high quality clinical treatment data within electronic health records (EHRs) that could be used for oncology clinical trials and other research.</p>
<p>ACTO and MITRE became the ICAREdata Use Case Champions. Over time, multiple health systems, clinical trials, Epic, NCI and FDA participated in, hosted, and/or funded development and testing.</p>
<p>Initial work focused on standardizing and collecting just three key data elements (cancer type, disease status (e.g., progressing, stable...), and reason for treatment change), all modeled within the fledgling mCODE IG.</p>
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