Merge pull request #3 from CodeX-HL7-FHIR-Accelerator/case-study-fixes

Additional links and images for case study
mitre · May 1, 2024 · b58a7dc · b58a7dc
2 parents f2d32d7 + 05c22fd
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diff --git a/source/casestudies/index.html.erb b/source/casestudies/index.html.erb
@@ -65,8 +65,8 @@ directory_index: false
         <h1 class="fw-bold lh-1 mb-3">mCODE Standard and CodeX Community</h1>
         <div class="row border-bottom py-4 mb-3">
           <div class="col-4">
-            <span class="field-label">Organization</span><br/>
-            <strong>MITRE Corp.</strong>
+            <span class="field-label">Organizations</span><br/>
+            <strong>American Society of Clinical Oncology, MITRE Corportation, and now over 40 additional organizations</strong>
           </div>
           <div class="col-4">
           </div>

diff --git a/source/casestudies/mcode_codex.html.erb b/source/casestudies/mcode_codex.html.erb
@@ -11,10 +11,10 @@ theme: casestudy
 
 
       <h3>mCODE Standard</h3>
-      <p>mCODE is a <strong>standard</strong>, FHIR Implementation Guide (IG) capturing a core set of common data elements for cancer that is computable, clinically applicable and available in every electronic health record for patients with a cancer diagnosis.</p>
+      <p><%= link_to("mCODE","https://confluence.hl7.org/display/COD/mCODE") %> is a <strong>standard</strong>, <%= link_to("FHIR Implementation Guide (IG)","https://hl7.org/fhir/us/mcode/index.html") %> capturing a core set of common data elements for cancer that is computable, clinically applicable and available in every electronic health record for patients with a cancer diagnosis.</p>
       <%= image_tag 'mcode-cancer-ring.png', :width => '500', :class => 'py-5' %>
       <h3>CodeX Community</h3> 
-      <p>CodeX is a Member-driven HL7 FHIR Accelerator hosting a growing <strong><em>community</strong></em> working together to enable the  needed to drive substantial improvements around the most important challenges health. Initial CodeX Use Cases (projects) focused on improving, collecting, and sharing mCODE-based data to improve cancer care and research.</p>
+      <p><%= link_to("CodeX","https://confluence.hl7.org/display/COD/CodeX+Home") %> is a Member-driven HL7 FHIR Accelerator hosting a growing <strong><em>community</strong></em> working together to drive substantial improvements around the most important challenges health. Initial CodeX Use Cases (projects) focused on improving, collecting, and sharing mCODE-based data to improve cancer care and research.  Through 2024, cardiovascular and genomics communities have also started work within CodeX.</p>
       <%= image_tag 'codex-vision.png', :width => '500', :class => 'py-5' %>
 
       <h2>How it started</h2>
@@ -26,7 +26,7 @@ theme: casestudy
       </div>
       <div class="col-lg-6">
         <h3>Learnings</h3>
-        <p>ASCO and MITRE, led by Drs. Bertagnolli and Schnitzer, became what we now call <%= link_to("Champions", "/playbook/community.html#champions") %>. As <strong>Champions</strong>, they:</p>
+        <p>ASCO and MITRE, led by Drs. Bertagnolli and Schnitzer, became what we now call <%= link_to("Champions", "/playbook/community.html#champions") %> for the new oncology specialty initiative. As <strong>Champions</strong>, they:</p>
 
         <ul>
           <li>Committed their leadership</li>
@@ -50,18 +50,18 @@ theme: casestudy
 
     <div class="row">
       <div class="col-lg-6">
-        <p><strong>Vision:</strong> Drs. Bertagnolli and Schnitzer and an increasing number of additional partners envisioned data standards there were necessary and foundational for achieving a Learning Health System. In a Learning Health System, each interaction between a patient and clinician results in high-quality data controlled by patients and usable as each patient wishes by future caregivers, researchers, and others. </p>
+        <p><strong>Vision:</strong> Drs. Bertagnolli and Schnitzer and an increasing number of additional partners envisioned data standards as foundational for achieving a Learning Health System. In a Learning Health System, each interaction between a patient and clinician results in high-quality data controlled by patients and usable as each patient wishes by future caregivers, researchers, and others. </p>
       </div>
       <div class="col-lg-6">
         <p><strong>Champions</strong> shared a common vision, providing a framework for future action.</p>
       </div>
     </div>
 
-    <h2>mCODE First Use Case</h2>
+    <h2>First mCODE Use Case</h2>
     <div class="row">
       <div class="col-lg-6">
         <h3>History 2018-2019</h3>
-        <p>First Use Case:  EHR Endpoints for Cancer Clinical Trials (ICAREdata study). 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:  <%= link_to("EHR Endpoints for Cancer Clinical Trials (ICAREdata study)","https://confluence.hl7.org/display/COD/EHR+Endpoints+for+Cancer+Clinical+Trials", :class=>"fw-bold") %>. 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>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 focus was on standardizing and collecting just three key data elements (cancer type, disease status (e.g., progressing, stable...), reason for treatment change) all modeled within the fledgling mCODE IG.</p>
       </div>
@@ -91,13 +91,21 @@ theme: casestudy
     <div class="row">
         <div class="col-lg-6">
         <h3>History 2019-2020</h3>
-        <p><b>Cancer Data Summit</b>: Interest in mCODE was starting to grow and new Use Cases were being proposed. A small group of leaders from across the oncology space (patients, providers, researchers, payers, gov’t agencies, vendors, etc.) convened for two days in October 2019 to brainstorm on the future of standardized cancer data, obstacles that could be prevent success, and next steps. [NOTE: see next slide] Support for creating a clinical requirements group (became the mCODE Executive Committee) and an implementation group (became CodeX).  See below.</p>
+        <p><%= link_to("Cancer Data Summit","https://confluence.hl7.org/display/COD/2019+Cancer+Data+Summit?preview=/66923557/66934772/Cancer-Data-Summit-Summary_2019.pdf", :class=>"fw-bold") %> Interest in mCODE was starting to grow and new Use Cases were being proposed. A small group of leaders from across the oncology space (patients, providers, researchers, payers, gov’t agencies, vendors, etc.) convened for two days in October 2019 to brainstorm on the future of standardized cancer data, obstacles that could be prevent success, and next steps. See the storytelling roadmap from the Cancer Data Summit below. Support for creating a clinical requirements group (became the mCODE Executive Committee) and an implementation group (became CodeX).  See below.</p>
       </div>
       <div class="col-lg-6">
         <h3>Learnings</h3>
         <p>The Summit provided substantial benefits. Extremely useful feedback was provided by a diverse set of leaders. Noticeable alignment between diverse views happened during the two day event. Strategies for next steps were shared. Many who attended the Summit expressed interested in staying involved, and many of those became Champions and participants in the future mCODE Executive Committee and CodeX Community.</p>
       </div>
     </div>
+    <div class="row">
+    <div class="col">
+      <figure>
+      <%= image_tag("images/cancer-data-summit-whiteboard.jpg", :width=>"100%") %>
+      <figcaption>A colorful whiteboard storytelling roadmap image from the Cancer Data Summit in October 2020</figcaption>
+        </figure>
+    </div>
+    </div>
     <div class="row">
         <div class="col-lg-6">
         <p><b>mCODE Executive Committee and Technical Review Group</b>: This body was organized under the leadership of ASCO, and included clinical leaders and experts from major cancer-related societies, government agencies, and others as needed.  The mandate continues to be to maintain and evolve the clinical description of the data elements in mCODE.</p>
@@ -108,7 +116,7 @@ theme: casestudy
     </div>
     <div class="row">
         <div class="col-lg-6">
-        <p><b>CodeX Community</b> To complement the Executive Committee’s clinical leadership, MITRE led the creation of CodeX within HL7’s just launched Accelerator Program. CodeX was established, and still operates, with a focus on implanting FHIR IGs into software and workflows, testing these in the field, and supporting adoption and value measurement in the real world. A lightweight process, governance structure [NOTE:  See slide 143] and Membership fee model  [NOTE: See slide 144] were established. There were 9 Founding Members and other categories Members by the end of 2020.</p>
+        <p><b>CodeX Community</b> To complement the Executive Committee’s clinical leadership, MITRE led the creation of CodeX within HL7’s just launched Accelerator Program. CodeX was established, and still operates, with a focus on implanting FHIR IGs into software and workflows, testing these in the field, and supporting adoption and value measurement in the real world. A lightweight process, <%= link_to("governance structure","https://confluence.hl7.org/display/COD/Governance") %> and <%= link_to("Membership fee model","https://confluence.hl7.org/display/COD/CodeX+Membership+Options") %> were established. There were 9 Founding Members and other categories Members by the end of 2020.</p>
       </div>
       <div class="col-lg-6">
         <p>Establishing the goal of adoption and value of a standard, rather than focusing primarily on standards development, was and is not easy.  This generally takes a greater commitment of resources and time from more parts of the community to achieve the goal. However, this goal resonated with the growing community, and ultimately paid off in new Use Cases, Members, adoption and value in the real world.</p>
@@ -132,14 +140,14 @@ theme: casestudy
         <h3>History 2021-2024</h3>
         <p>CodeX Use Case Growth</p>
         <ul>
-	<li>Dec 2020: 5 Use Cases</li>
-	<li>Dec 2021: 8 Use Cases (including 1st 2 genomics Use Case)</li>
-	<li>Dec 2023:  12 Use Cases (including 1st cardiovascular Use Cases)</li>
-	</ul>
+          <li>Dec 2020: 5 Use Cases</li>
+          <li>Dec 2021: 8 Use Cases (including 1st 2 genomics Use Case)</li>
+          <li>Dec 2023:  12 Use Cases (including 1st cardiovascular Use Cases)</li>
+        </ul>
       </div>
       <div class="col-lg-6">
         <h3>Learnings</h3>
-        <p>CodeX setup a selection process for ensuring Use Cases have a higher probability of success. The table [NOTE: next slide] lists Use Case start dates and the Champions that drove them. Medical Societies and Government agencies were the most frequent Champions.</p>
+        <p>CodeX setup a <%= link_to("selection process","https://confluence.hl7.org/display/COD/CodeX+Use+Case+Development+Guidelines") %> for helping to ensure Use Cases have the ingredients (like the tracks described on this website) to succeed. The table below lists Use Case start dates and the Champions that drove them. Medical Societies and Government agencies were the most frequent Champions.</p>
       </div>
     </div>
     <div class="row">

diff --git a/source/images/cancer-data-summit-whiteboard.jpg b/source/images/cancer-data-summit-whiteboard.jpg
diff --git a/source/index.html.erb b/source/index.html.erb
@@ -26,11 +26,11 @@ layout: home
   <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
+      <p>The <%= link_to("CodeX HL7 Accelerator","https://confluence.hl7.org/display/COD/CodeX+Home") %> 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
+        <%= link_to("minimal Common Oncology Data Elements (mCODE)","https://confluence.hl7.org/display/COD/mCODE") %> standard.  Now, the
         expanding CodeX community is also addressing problems in the
         cardiovascular disease and genomics domains.
       </p>

diff --git a/source/playbook/community.html.erb b/source/playbook/community.html.erb
@@ -14,7 +14,7 @@ title: Community
       <p class="lead">Gathering the right organizations and people has been the most foundational and challenging track in the CodeX Playbook.</p>
       <p>It’s very likely that almost everyone reviewing this site agrees that enabling true health data interoperability is more a social challenge, than a medical or technical challenge. It takes people who share a vision and mission, can align different views of how to get there, and invest the resources needed to change the status quo such that the mission gains sufficient momentum to substantially improve health for everyone. </p>
 
-      <p>Actions that CodeX has found indispensable include (a) Champions, (b) Governance, and (c) Community Growth.  These actions are expanded upon below.</p>
+      <p>Actions that <%= link_to("CodeX","https://confluence.hl7.org/display/COD/CodeX+Home") %> has found indispensable include (a) Champions, (b) Governance, and (c) Community Growth.  These actions are expanded upon below.</p>
 
       <h3 id="champions">Champions</h3>
       <p>An essential first step is to gather specialty Champions that share a vision, are committed to lead, and have broad constituencies and access to resources. The specialty as a whole and each Use Case (projects) within the specialty initiative need Champions.</p>
@@ -31,14 +31,14 @@ title: Community
       </ul>
 
       <p>It's clear that Champions have significant responsibilities.  But they also appreciate the future benefits in terms of better health care and research. </p>
-      <p>Large, medical professional societies and Government organizations have been the most frequent CodeX Champions for most Use Cases, but other stakeholders have also been effective Champions. The founding CodeX Champions were American Society of Clinical Oncology (ASCO), with reach to all oncologists and centers; and The MITRE Corporation, with deep expertise in convening, FHIR standards and systems engineering. </p>
+      <p>Large, medical professional societies and Government organizations have been the most frequent CodeX Champions for most Use Cases, but other stakeholders have also been effective Champions. The founding CodeX Champions were <%= link_to("American Society of Clinical Oncology (ASCO)","https://www.asco.org") %>, with reach to all oncologists and centers; and <%= link_to("The MITRE Corporation","https://www.mitre.org") %>, with deep expertise in convening, FHIR standards and systems engineering. </p>
 
 
 
       <h3 id="governance">Governance</h3>
       <p>An organizational framework is important for any initiative involving many organizations, often with divergent interests and views. Views and interests need to heard and understood. Decisions need to be taken and services provided to facilitate work. Examples include updates to the initial Governance structure, Membership structure and fees, adjudicating conflicts, administrative support, starting new Use Case work, and providing funding and resources to projects in special cases when the Community can’t. </p>
-      <p>CodeX Accelerator provides the Governance for Use Cases around cancer (and the mCODE standard), cardiovascular disease, and genomics, so far. Other governance schemes are possible but would require more effort to start and to coordinate effectively across specialties.  </p>
-      <p>The graphic below captures the CodeX Governance structure as of 2024.  The tiered structure offers participation different of levels of responsibility and time commitment.  Details of the current <%= link_to("CodeX Governance scheme can be on their website.","https://confluence.hl7.org/display/COD/Governance")%></p>
+      <p>CodeX Accelerator provides the Governance for Use Cases around cancer (and the <%= link_to("mCODE standard","https://confluence.hl7.org/display/COD/mCODE") %>), cardiovascular disease, and genomics, so far. Other governance schemes are possible but would require more effort to start and to coordinate effectively across specialties.  </p>
+      <p>The graphic below captures the CodeX Governance structure as of 2024.  The tiered structure offers participation different of levels of responsibility and time commitment.  Details of the current <%= link_to("CodeX Governance scheme can be found on their website.","https://confluence.hl7.org/display/COD/Governance")%></p>
 
       <p><%= image_tag 'governance_structure.png', :width => '100%', :class => 'py-5' %></p>
 
@@ -47,7 +47,7 @@ title: Community
 
       <h3 id="growth">Community Growth</h3>
       <p>For Use Case projects to progress from a vision to adoption and value in the real world, a variety of organizations and skillsets are needed. Thus, the community must be grown such that there are participants with direct experience related to each of the envisioned roles Use Cases.</p>
-      <p>For example, in the CodeX Radiation Therapy Case Study [NOTE: Link to a Case Study part of the website?], the team included radiation therapy societies, health systems, radiation oncologists, radiation physicists, payers, and vendor. Skillsets included clinical practice, physics, software engineering, informaticists, FHIR developers, HL7 standards process experts, etc. Getting the right set of people together at the right times in the process can be challenging. It’s ideal to have redundancy among these roles, in case some people have to reduce their effort.</p>
+      <p>For example, in the CodeX Radiation Therapy Case Study, the team included radiation therapy societies, health systems, radiation oncologists, radiation physicists, payers, and vendor. Skillsets included clinical practice, physics, software engineering, informaticists, FHIR developers, HL7 standards process experts, etc. Getting the right set of people together at the right times in the process can be challenging. It’s ideal to have redundancy among these roles, in case some people have to reduce their effort.</p>
       <p>The good news is that a promising Use Case has the potential to attract new participants. These participants appreciate the potential value of the work, are willing to invest resources to realize that value, and want to be at the table where decisions are made and work is executed.</p>
       <p>CodeX experience suggests that different value propositions often resonate with different stakeholders. The following generalizes the values to a specialty data standardization initiative for involvement six different types of stakeholders, and the value propositions that often resonate with the same stakeholders.</p>