collaborative.html

---
layout: default
title: collaborative
---
  
<section  id="collaborative">
  <div class="container"> 
    <div class="row"> 
      <div class="section-heading">
        <h1 class="text-center">Our Initiatives</h1>
      </div>      
    </div> 
  </div>
  <div class="container">
    <div class="section-content panel panel-default" id="first-section">
      <div class="row">
        <div class="col-md-3">
          <a href="http://standardhealth.github.io"><img src="/assets/img/shr_brand_logo.svg" alt="SHR image" class="side_img"/></a>
        </div>
        <div class="col-md-8">
          <h1>Standard Health Record</h1>

          <p><a href="http://standardhealth.github.io">The Standard Health Record Collaborative</a> is working to create the Standard Health Record (SHR), a single, high-quality health record for every individual in the United States. The SHR provides the foundation for the collection, communication, and aggregation of patient data, into one accurate, timely, precise, relevant, and complete record. SHR will  accelerate secondary uses in public health, disease surveillance, post-approval monitoring, and patient-centered outcomes research. By establishing a single target for health data, the SHR can solve clinical interoperability and support a wide-range of clinicians, caregivers and healthcare providers. </p>
          <p> Enabling transparency and precise communication across the healthcare system, the SHR leads clinicians and the American public to realize major benefits through improved care coordination, reduction of medical errors, minimization of waste, fraud, and abuse, and decreased costs that accompany healthier lives.</p>

          <p>  Currently, SHR provides standards for recording information about:</p>
          <ul>
            <li>Actors who play a role in the health space</li>
            <li>Immunization history of patients</li>
            <li>Human behaviors that impact present and future health (e.g. SmokingStatus and ContraceptiveMethodsUsed)</li>
            <li>Patient demographics </li>
            <li>Environmental factors that impact patient health and treatment access</li>
            <li>Life histories of patients, reflecting any changes over time</li>
            <li>Medications, highlighting treatment specific details and medication adherence </li>
            <li>Vital sign metrics crucial to emergency and in-patient treatment (e.g. DiastolicPressure and OxygenSaturation)</li>
          </ul>

          <p> As an open source project, the SHR engages a broad community and can provide a powerful model for global health. <strong>To contribute</strong>, please visit the Standard Health Record Collaborative on <a href="https://github.com/standardhealth">Github</a>. Additionally, in the spirit of engaging the open source community, we maintain a <a href="https://lightmyfhir.org">blog</a> where we share posts on topics in data modeling, our experience with FHIR, and other healthcare topics. Visit us at <a href="https://lightmyfhir.org">lightmyfhir.org</a> to read more!</p>
      </div>
      </div>
    </div>

    <div class=" section-content panel panel-default">
      <div class="row">
        <div class="col-md-3">
          <a href="https://github.com/synthetichealth/synthea"><img src="/assets/img/guy_poly2.jpg" alt="Synthea image" class="side_img"/></a>

        </div>
        <div class="col-md-8">
          <h1>Synthea</h1>
          
          <p><a href="https://synthetichealth.github.io/synthea/">Synthea</a> is a Synthetic Patient Population Simulator that is used to generate the synthetic patients. Synthea outputs synthetic, realistic (but not real) patient data and associated health records in a variety of formats. Read our <a href="https://github.com/synthetichealth/synthea/wiki">wiki</a> for more information.</p>
          <p>Currently, Synthea features:</p>
                <ul>
                  <li>Birth to Death Lifecycle</li>
                  <li>Configuration-based statistics and demographics (defaults with Massachusetts Census data)</li>
                  <li>Modular Rule System</li>
                  <li style="list-style: none;">
                    <ul>
                      <li>Drop in Generic Modules</li>
                      <li>Custom Ruby rules modules for additional capabilities</li>
                    </ul>
                  </li>
                  <li>Primary Care Encounters, Emergency Room Encounters, and Symptom-Driven Encounters</li>
                  <li>Conditions, Allergies, Medications, Vaccinations, Observations/Vitals, Labs, Procedures, CarePlans</li>
                  <li>Formats</li>
                  <li style="list-style: none;">
                    <ul>
                      <li>FHIR (STU3 v1.8)</li>
                      <li>C-CDA</li>
                    </ul>
                  </li> 
                  <li>Rendering Rules and Disease Modules with Graphviz</li>
                </ul>
          <p>
            <strong>To contribute</strong> please visit Synthea on <a href="https://github.com/synthetichealth/synthea">Github</a>.
          </p>
        </div>
      </div>
    </div>

    <div class="section-content panel panel-default">
    <!-- <section class="section-content"> -->
      <div class="row">
        <div class="col-md-3">
          <a href="http://syntheticmass.mitre.org"><img src="./assets/img/synthmass_map.jpg" alt="Background image"  class="side_img"/></a>
        </div>
        <div class="col-md-8">
          <h1>SyntheticMass</h1>

          <p><a href="http://syntheticmass.mitre.org">SyntheticMass</a> contains a million realistic but fictional residents of the state of Massachusetts. The synthetic population statistically mirrors the real population in terms of demographics, disease burden, vaccinations, medical visits, and social determinants. SyntheticMass establishes a risk-free environment for experimenting with:</p>
          <ul>
            <li>Data Visualization</li>
            <li>Risk stratification</li>
            <li>Care management</li>
            <li>Clinical decision support</li>
            <li>Patient reported data integration</li>
            <li>Evaluation of new treatment models</li>
            <li>Privacy and consent models</li>
            <li>Security and authorization models</li>
            <li>Third-party app development</li>
          </ul>

          <p>SyntheticMass will provide a sandbox for Health IT developers, researchers and clinicians interested in exploring new healthcare solutions. It enables this through:</p>
          <ul>
            <li>Realistic data for fictional patients</li>
            <li>Data that is free of protected health information (PHI) and personally identifiable information (PII) constraints</li>
            <li>Datasets updated over time based on clinical healthcare models and epidemiological models of population health.</li>
          </ul>
          <p><strong>To contribute</strong> please visit SyntheticMass on <a href="https://github.com/synthetichealth/syntheticmass">Github</a></p>
        </div>
      </div>
    </div>

    <div class=" section-content panel panel-default">
      <div class="row">
        <div class="col-md-3">
          <a href="https://fluxnotes.org/">
            <img src="/assets/img/fluxnotes_logo_color.png" alt="flux Notes image" class="side_img" />
          </a>
    
        </div>
        <div class="col-md-8">
          <h1>Flux Notes&#8482;</h1>
    
          <p><a href="https://fluxnotes.org/">Flux Notes</a> is an open source, standard health record-based application that demonstrates the capture of structured high quality,
          longitudinal and computable health records data without disrupting the clinicians' preferred narrative approach. The new
          health records data will support clinical oncology research and care.
          </p>
          <p>Flux Notes aims to:</p>
          <ul>
            <li>Inform data-driven patient care</li>
            <li>Drive rare disease research</li>
            <li>Inform therapeutics development</li>
            <li>Inform regulatory decision-making</li>
            <li>Optimize utilization</li>
            <li>Lower provider burden</li>
          </ul>
          <p>Flux Notes has two versions, Flux Notes Lite and Flux Notes Full. Flux Notes Lite helps clinicians capture data to 
            drive clinical endpoints, such as disease status and toxicity. This information is stored in a structured data format that 
            can be easily analyzed and shared across multiple clinical care sites. Flux Notes Full allows information capture via 
            extensible structured phrases driven by the Standard Health Record (SHR). To contribute, visit the
            <a href="https://github.com/standardhealth/flux">GitHub Repository</a>.
          </p>
        </div>
      </div>
    </div>

    <div class=" section-content panel panel-default">
      <div class="row">
        <div class="col-md-3">
          <a href="http://icaredata.org/">
            <img src="/assets/img/icare_logo.png" alt="ICARE image" class="side_img" />
          </a>
    
        </div>
        <div class="col-md-8">
          <h1>ICAREdata&#8482; Project</h1>
    
          <p>The goal of the
            <a href="http://icaredata.org/">ICAREdata Project</a> is to support the collection of high-quality real-world data, that is complete, accurate,
            and computable, in a way that enables clinical oncology research.
          </p>
    
          <p>Establishing a large scale, prospective collection and integration of high quality clinical data across multiple clinical
            care sites would increase the available data to include both data from randomized clinical trials (RCTs) and high-quality
            real-world data (RWD). This approach would also allow development of effective treatment strategies for cohorts of
            patients that are not amenable to study in RCTs such as rare tumors or uncommon disease types, as well as allow an
            understanding of the natural history and response to therapy for diseases where multiple sequential therapeutic regimens
            are employed. Additionally, our goal is to inform regulatory decision making by helping to determine how to best
            use real-world evidence for medical product regulatory decision-making and achieving efficient and accurate post-market
            surveillance of FDA-approved therapeutics. Lastly, this will inform data driven patient care by understanding the
            efficacy and safety of approved therapeutic agents in underrepresented and minority populations and accumulating
            a large number of patients and data required to achieve success in personalized medicine.
          </p>
        </div>
      </div>
    </div>

    <div class=" section-content panel panel-default">
      <div class="row">
        <div class="col-md-3">
          <!-- <a href="">
            <img src="/assets/img/guy_poly2.jpg" alt="Synthea image" class="side_img" />
          </a> -->
        <img src="/assets/img/data_curation_logo.png" alt="Data Curation image" class="side_img" />
        </div>
        <div class="col-md-8">
          <h1>The Data Curation Study</h1>
    
          <p>
            The Data Curation Study is a retrospective study to evaluate the ability of a high quality, longitudinal and
            computable standard health record to support evidence-based, data-driven and personalized decisions in the domain
            of breast cancer treatment.</p>
          <p>The approach for each of the three breast cancer patients:</p>
          <ul>
            <li>Collect longitudinal data for N years prior to the patient’s cancer diagnosis from the patient, prior and current
              providers and payers</li>
            <li>Configuration-based statistics and demographics (defaults with Massachusetts Census data)</li>
            <li>Curate the patient data to establish an integrated high quality, longitudinal and computable standard health record
              (SHR)</li>
            <li>Prototype visualizations of an individual patient’s SHR informed by subject matter expertise guidance on key factors
              in treatment decisions</li>
            <li>Evaluate the ability of the SHR to support evidence-based, data driven and personalized breast cancer treatment decisions</li>
          </ul>
          <p>
            The goal is to assess the ”quality” of real world data and value of particular types of data to support breast cancer treatment
            decisions along with associated “cost” to collect data.
          </p>
        </div>
      </div>
    </div>

    <div class=" section-content panel panel-default">
      <div class="row">
        <div class="col-md-3">
          <a href="https://healthservices.atlassian.net/wiki/spaces/CIIC/overview">
            <img src="/assets/img/ciic_logo.png" alt="CIIC image" class="side_img" />
          </a>
        </div>
        <div class="col-md-8">
          <h1>Clinical Information Interoperability Council</h1>
    
          <p>
            MITRE’s goal is to ensure that its investment in the Standard Health Record data modeling, FHIR profiling, and tooling migrates
            into, strengthens and expands open health data standards efforts. <a href="http://www.hl7.org">Health Level 7 (HL7)</a> is the
            leading standards development organization for health informatics. MITRE is an active contributor to HL7’s Clinical Information
            Modeling Initiative (CIMI) and FHIR groups.</p>
          <p>
            CIMI is the primary place where solutions to modeling requirements will be discussed and developed for the new 
            <a href="https://healthservices.atlassian.net/wiki/spaces/CIIC/overview">Clinical Information Interoperability Council (CIIC)</a>
            and likely for other uses. CIIC is driven by clinicians, generally through professional health societies. CIIC is a forum for gathering
            the clinical requirements to important project. From these requirements, open standard models can be built, thus enabling
            accurate collection, easy sharing, deep analysis of all data, and actions that improve the health of people and populations.
            MITRE serves on the leadership team of CIIC.
          </p>
        </div>
      </div>
    </div>

    <div class="section-content panel panel-default">
      <div class="row">
        <div class="col-md-3">
          <a href="http://www.mitre.org"><img src="/assets/img/MITRE_location.jpg" alt="MITRE image" class="side_img"/></a>


        </div>
        <div class="col-md-8">

          <h1>About the team behind Standard Health Record Collaborative</h1>

          <p>
            <a href="http://www.mitre.org">The MITRE Corporation</a> is a not-for-profit company working in the public interest, operating multiple federally funded research and development centers (FFRDCs). FFRDCs are unique organizations that assist the United States government with scientific research and analysis, development and acquisition, and systems engineering and integration. MITRE does not have commercial interests and cannot compete for anything except the right to operate FFRDCs. This lack of commercial conflicts of interest forms the basis for MITRE’s objectivity and subsequent ability to acquire sensitive and proprietary information from the government and industry to inform critical initiatives.
          </p>
          <p>
            The CMS Alliance to Modernize Healthcare (CAMH) FFRDC, sponsored by the Centers for Medicare &amp; Medicaid Services (CMS), assists both the CMS and the Department of Health and Human Services (HHS) in performing research and analysis on various topics that fall within the national health domain. As the CAMH FFRDC operator and partner, MITRE serves as an objective, independent advisor to CMS and HHS operating divisions. As the only broadly healthcare-focused FFRDC, CAMH supports many of the complex analysis and critical thinking requirements that encompass the business, policy, technology, and operational interests across CMS and HHS.
          </p>
        </div>
      </div>
    </div>

  </div>
</section>