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mrnosal committed May 1, 2024
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84 changes: 39 additions & 45 deletions casestudies/mcode_codex.html
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Expand Up @@ -307,62 +307,56 @@ <h3>Early Adopter Observations </h3>

<h2>Growth and Impact Over the Years</h2>
<ul>
<li> MITRE supporting the <b>White House Cancer Moonshot</b></li>

<li><b>NCI’s</b> National Cancer Plan reflects vision of MITRE’s work </li>

<li><b>CMS</b> using mCODE in their Enhancing Oncology Model</li>

<li><b>FDA</b> championing CodeX REMS Integration Use Case</li>

<li><b>CDC’s</b> use of mCODE for central cancer registry reporting</li>

<li><b>ONC’s</b> US Core Data For Interoperability (USCDI) + Cancer is aligned with mCODE</li>

<li><b>ONC</b> included select mCODE data elements in their US Core Data for Interoperability Quality Data Element List</li>
</ul>
<li>MITRE supporting the <b>White House Cancer Moonshot</b></li>
<li><b>NCI’s</b> National Cancer Plan reflects vision of MITRE’s work </li>
<li><b>CMS</b> using mCODE in their Enhancing Oncology Model</li>
<li><b>FDA</b> championing CodeX REMS Integration Use Case</li>
<li><b>CDC’s</b> use of mCODE for central cancer registry reporting</li>
<li><b>ONC’s</b> US Core Data For Interoperability (USCDI) + Cancer is aligned with mCODE</li>
<li><b>ONC</b> included select mCODE data elements in their US Core Data for Interoperability Quality Data Element List</li>
</ul>
<img src="../images/mcode-outcome-boxes.png" width="600" class="py-5" alt="" />

<h2>Conclusions from the mCODE / CodeX Case Study</h2>
<p>Between 2019 and 2024, the CodeX Community and colleagues improved and leveraged mCODE to address difficult problems in oncology, substantially improving cancer care and research. The cardiology and genomics communities are starting their CodeX journey. For additional, new specialties considering following the mCODE / CodeX experience, here the five most important first steps to consider:</p>
<ol>
<ol class="action-list">
<li>Strong Community Champions Drive Success
<ul>
<li> Champions are the most important key to the steps below. Champions understand needs, reach large constituencies, and mobilize resources.</li>
<li>Leading medical professional societies and Government organizations have been the successful CodeX Champions.</li>
<li>Must commit to the approach, to leading a project that grows in complexity and participation, and to helping to find skills and funding.</li>
</ul>
<li>Champions are the most important key to the steps below. Champions understand needs, reach large constituencies, and mobilize resources.</li>
<li>Leading medical professional societies and Government organizations have been the successful CodeX Champions.</li>
<li>Must commit to the approach, to leading a project that grows in complexity and participation, and to helping to find skills and funding.</li>
</ul>
</li>

<li>Effective Governance facilitates communications, decision making, project management, resource distribution
<ul>
<li> Must be lightweight, with focus on providing infrastructure, starting use cases, adjudicating concerns, and applying funding to projects (sparingly).</li>
<li>The CodeX HL7 FHIR Accelerator serves this purpose for Use Cases around cancer (mCODE standard), cardiovascular disease, and genomics, so far. Other governance schemes are possible but would require more effort to startup and engage across specialties.</li>
</ul>
</li>
<li>Use Cases help prioritize effort into manageable segments
<ul>
<li>Each Use Case includes a specific health IT or process challenge that (a) attracts more participants into the community, (b) defines, validates, and/or motivates improvements to underlying workflows and standards, and (c) motivates demand, adoption, and value. Data are collected and shared using the same standard for multiple use cases.</li>
<li>Initial CodeX Use Cases often start with “lower-bar” problems around which many stakeholders can align (2b). Use Cases can grow in scope over time.</li>
</ul>
</li>
<ul>
<li>Must be lightweight, with focus on providing infrastructure, starting use cases, adjudicating concerns, and applying funding to projects (sparingly).</li>
<li>The CodeX HL7 FHIR Accelerator serves this purpose for Use Cases around cancer (mCODE standard), cardiovascular disease, and genomics, so far. Other governance schemes are possible but would require more effort to startup and engage across specialties.</li>
</ul>
</li>
<li>Use Cases help prioritize effort into manageable segments
<ul>
<li>Each Use Case includes a specific health IT or process challenge that (a) attracts more participants into the community, (b) defines, validates, and/or motivates improvements to underlying workflows and standards, and (c) motivates demand, adoption, and value. Data are collected and shared using the same standard for multiple use cases.</li>
<li>Initial CodeX Use Cases often start with “lower-bar” problems around which many stakeholders can align (2b). Use Cases can grow in scope over time.</li>
</ul>
</li>

<li>Plan for Adoption & Value from the start
<ul>
<li>Each Use Case needs a pragmatic approach that envisions how the resulting solution will improve care and/or reduce burden.</li>
<li>Engagement of future users who require (e.g., gov’t agencies) and/or demand (e.g., customers) vendors to implement solutions has proved invaluable in CodeX.</li>
</ul>
</li>
<li>Plan for Adoption & Value from the start
<ul>
<li>Each Use Case needs a pragmatic approach that envisions how the resulting solution will improve care and/or reduce burden.</li>
<li>Engagement of future users who require (e.g., gov’t agencies) and/or demand (e.g., customers) vendors to implement solutions has proved invaluable in CodeX.</li>
</ul>
</li>

<li>Resources Fuel Execution
<ul>
<li>Starting Use Cases and demonstrating solutions require specific types of organizations, skillsets, and often financing – at the right times.</li>
<li>Resource requirements are typically less clear at the start but become clearer as work evolves.</li>
<li>Use Case scope and timelines can be scaled to available resources and still be successful.</li>
<li>Initial, rapid, promising Use Case results help attract and justify involvement of organizations, gathering the needed skillsets, and securing funding.</li>
</ul>
</li>
</ol>
<li>Resources Fuel Execution
<ul>
<li>Starting Use Cases and demonstrating solutions require specific types of organizations, skillsets, and often financing – at the right times.</li>
<li>Resource requirements are typically less clear at the start but become clearer as work evolves.</li>
<li>Use Case scope and timelines can be scaled to available resources and still be successful.</li>
<li>Initial, rapid, promising Use Case results help attract and justify involvement of organizations, gathering the needed skillsets, and securing funding.</li>
</ul>
</li>
</ol>

</div>
</div>
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68 changes: 37 additions & 31 deletions index.html
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Expand Up @@ -48,8 +48,8 @@
</div>
<div class="col-lg-6">
<h1 class="display-5 fw-bold text-body-emphasis lh-1 mb-3">Welcome to the CodeX Playbook!</h1>
<p class="lead">Sharing the CodeX Community’s and other experience deploying oncology data standards that solve real-world challenges in patient care and research.</p>
<p class="lead">Inviting all medical specialties to learn from and join the mission.</p>
<p class="lead">Sharing the CodeX Community’s experience deploying oncology data standards that solve real-world challenges in patient care and research.</p>
<p class="lead">All medical specialties are invited to learn from and join the mission.</p>
<div class="d-grid gap-2 d-md-flex justify-content-md-start">
<a type="button" class="btn btn-primary btn-lg px-4 me-md-2" href="playbook/index.html">Get Started</a>
</div>
Expand All @@ -61,23 +61,29 @@ <h1 class="display-5 fw-bold text-body-emphasis lh-1 mb-3">Welcome to the CodeX
<div class="container py-4 border-bottom">
<h2 class="pb-2 fw-bold">Mission and Purpose</h2>
<div class="row">
<div class="col-md-6"><p>Today, a patient’s health story is nearly impossible to gather and share because data are unreliable, stored in different locations, lack standardization, and are largely unusable. </p>
<p>The CodeX HL7 Accelerator is a member-driven
community that is breaking down silos endemic to our current system
for specialty health data. The initial projects within CodeX worked to
solve problems in the cancer space, building and leveraging the
minimal Common Oncology Data Elements (mCODE) standard. Now, the
expanding CodeX community is also addressing problems in the
cardiovascular disease and genomics domains. </p></div><div class="col-md-6"><p>Circumstances across the
health landscape are converging to make today, finally, the right time
for all medical specialties to standardize health data and deploy
solutions to their most challenges problems. It’s hoped that the CodeX
experience shared on this site will speed the work of other
specialties. It’s also hoped that aligning future work with the CodeX
approach will help ensure that specialty-based efforts are done in a
consistent manner that enables every person to have a coherent,
lifetime Standard Health Record that improves health care and research
for all. </p></div>
<div class="col-md-6">
<p>Today, a patient’s health story is nearly impossible to gather and share because data are unreliable, stored in different locations, lack standardization, and are largely unusable. </p>
<p>The CodeX HL7 Accelerator is a member-driven
community that is breaking down silos endemic to our current system
for specialty health data. The initial projects within CodeX worked to
solve problems in the cancer space, building and leveraging the
minimal Common Oncology Data Elements (mCODE) standard. Now, the
expanding CodeX community is also addressing problems in the
cardiovascular disease and genomics domains.
</p>
</div>
<div class="col-md-6">
<p>Circumstances across the
health landscape are converging to make this time in history, finally, the right time
for all medical specialties to standardize health data and deploy
standards-based solutions to their most challenges problems. It’s hoped that the CodeX
experience shared on this site will speed the work of other
specialties. It’s also hoped that aligning future specialty standards development with the CodeX
approach will help ensure that new efforts are implemented
consistently, so that every person will have a coherent, cross-specialty,
lifetime Standard Health Record that improves care and research for all.
</p>
</div>
</div>
<div class="row g-4 py-5 row-cols-1 row-cols-lg-3">
<div class="feature col">
Expand Down Expand Up @@ -137,23 +143,23 @@ <h2 class="pb-2">Featured Case Studies</h2>
<p class="col-md-6">Projects that have used the principles and best practices covered in the Playbook.</p>
<div class="row g-4 py-5 row-cols-1 row-cols-lg-3">
<div class="feature col">
<img class="mb-5" src="images/blank-image.png" style="max-width:300px">
<h3 class="fs-2 text-body-emphasis">mCODE</h3>
<p>Learn how developing a core set of structured data elements for oncology electronic health records changed oncology research.</p>
</div>
<img class="mb-5" src="images/blank-image.png" style="max-width:300px">
<h3 class="fs-2 text-body-emphasis">mCODE</h3>
<p>Learn how the CodeX Community was created and is implementing a standard, core set of data elements that are changing oncology care and research.</p>
</div>


<div class="feature col">
<img class="mb-5" src="images/blank-image.png" style="max-width:300px">
<h3 class="fs-2 text-body-emphasis">mCARD</h3>
<p>Development of FHIR standard for a core set of common data elements for cardiovascular health.</p>
</div>
<img class="mb-5" src="images/blank-image.png" style="max-width:300px">
<h3 class="fs-2 text-body-emphasis">mCARD</h3>
<p>Development of FHIR standard for a core set of common data elements for cardiovascular health.</p>
</div>

<div class="feature col">
<img class="mb-5" src="images/blank-image.png" style="max-width:300px">
<h3 class="fs-2 text-body-emphasis">PACIO Project</h3>
<p>Streamlining transitions of care and care coordination between post-acute care (PAC) and other providers, patients, and key stakeholders through FHIR.</p>
</div>
<img class="mb-5" src="images/blank-image.png" style="max-width:300px">
<h3 class="fs-2 text-body-emphasis">PACIO Project</h3>
<p>Streamlining transitions of care and care coordination between post-acute care (PAC) and other providers, patients, and key stakeholders through FHIR.</p>
</div>
</div>
</div>

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