diff --git a/casestudies/mcode_codex.html b/casestudies/mcode_codex.html index 51e7be7..71d0ad1 100644 --- a/casestudies/mcode_codex.html +++ b/casestudies/mcode_codex.html @@ -307,62 +307,56 @@

Early Adopter Observations

Growth and Impact Over the Years

+
  • MITRE supporting the White House Cancer Moonshot
    • +
  • NCI’s National Cancer Plan reflects vision of MITRE’s work
    • +
  • CMS using mCODE in their Enhancing Oncology Model
    • +
  • FDA championing CodeX REMS Integration Use Case
    • +
  • CDC’s use of mCODE for central cancer registry reporting
    • +
  • ONC’s US Core Data For Interoperability (USCDI) + Cancer is aligned with mCODE
    • +
  • ONC included select mCODE data elements in their US Core Data for Interoperability Quality Data Element List
    • +

    Conclusions from the mCODE / CodeX Case Study

    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:

    -
      +
      1. Strong Community Champions Drive Success
          -
        • Champions are the most important key to the steps below. Champions understand needs, reach large constituencies, and mobilize resources.
          • -
        • Leading medical professional societies and Government organizations have been the successful CodeX Champions.
          • -
        • Must commit to the approach, to leading a project that grows in complexity and participation, and to helping to find skills and funding.
          • -
        +
      2. Champions are the most important key to the steps below. Champions understand needs, reach large constituencies, and mobilize resources.
        3. +
      3. Leading medical professional societies and Government organizations have been the successful CodeX Champions.
        4. +
      4. Must commit to the approach, to leading a project that grows in complexity and participation, and to helping to find skills and funding.
        5. +
      5. Effective Governance facilitates communications, decision making, project management, resource distribution -
          -
        • Must be lightweight, with focus on providing infrastructure, starting use cases, adjudicating concerns, and applying funding to projects (sparingly).
          • -
        • 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.
          • -
        -
        6. -
      6. Use Cases help prioritize effort into manageable segments -
          -
        • 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.
          • -
        • 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.
          • -
        -
        7. + + +
      7. Use Cases help prioritize effort into manageable segments +
          +
        • 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.
          • +
        • 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.
          • +
        +
        8. -
      8. Plan for Adoption & Value from the start -
          -
        • Each Use Case needs a pragmatic approach that envisions how the resulting solution will improve care and/or reduce burden.
          • -
        • 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.
          • -
        -
        9. +
      9. Plan for Adoption & Value from the start +
          +
        • Each Use Case needs a pragmatic approach that envisions how the resulting solution will improve care and/or reduce burden.
          • +
        • 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.
          • +
        +
        10. -
      10. Resources Fuel Execution -
          -
        • Starting Use Cases and demonstrating solutions require specific types of organizations, skillsets, and often financing – at the right times.
          • -
        • Resource requirements are typically less clear at the start but become clearer as work evolves.
          • -
        • Use Case scope and timelines can be scaled to available resources and still be successful.
          • -
        • Initial, rapid, promising Use Case results help attract and justify involvement of organizations, gathering the needed skillsets, and securing funding.
          • -
        -
        11. -
      +
    1. Resources Fuel Execution + +
      2. +
    diff --git a/images/5_steps.png b/images/5_steps.png index d0573c4..d12d8ed 100644 Binary files a/images/5_steps.png and b/images/5_steps.png differ diff --git a/index.html b/index.html index 25ca1b2..62ee7b2 100644 --- a/index.html +++ b/index.html @@ -48,8 +48,8 @@

    Welcome to the CodeX Playbook!

    -

    Sharing the CodeX Community’s and other experience deploying oncology data standards that solve real-world challenges in patient care and research.

    -

    Inviting all medical specialties to learn from and join the mission.

    +

    Sharing the CodeX Community’s experience deploying oncology data standards that solve real-world challenges in patient care and research.

    +

    All medical specialties are invited to learn from and join the mission.

    Get Started
    @@ -61,23 +61,29 @@

    Welcome to the CodeX

    Mission and Purpose

    -

    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.

    -

    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.

    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.

    +
    +

    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.

    +

    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. +

    +
    +
    +

    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. +

    +
    @@ -137,23 +143,23 @@

    Featured Case Studies

    Projects that have used the principles and best practices covered in the Playbook.

    - -

    mCODE

    -

    Learn how developing a core set of structured data elements for oncology electronic health records changed oncology research.

    -
    + +

    mCODE

    +

    Learn how the CodeX Community was created and is implementing a standard, core set of data elements that are changing oncology care and research.

    +
    - -

    mCARD

    -

    Development of FHIR standard for a core set of common data elements for cardiovascular health.

    -
    + +

    mCARD

    +

    Development of FHIR standard for a core set of common data elements for cardiovascular health.

    +
    - -

    PACIO Project

    -

    Streamlining transitions of care and care coordination between post-acute care (PAC) and other providers, patients, and key stakeholders through FHIR.

    -
    + +

    PACIO Project

    +

    Streamlining transitions of care and care coordination between post-acute care (PAC) and other providers, patients, and key stakeholders through FHIR.

    +

    diff --git a/playbook/community.html b/playbook/community.html index d01634e..f126d7b 100644 --- a/playbook/community.html +++ b/playbook/community.html @@ -81,7 +81,7 @@

    Playbook Menu

    Building Community

    Gathering the right organizations and people has been the most foundational and challenging track in the CodeX Playbook.

    -

    It’s very likely that almost everyone reviewing this site agree 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.

    +

    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.

    Actions that CodeX has found indispensable include (a) Champions, (b) Governance, and (c) Community Growth. These actions are expanded upon below.

    @@ -118,11 +118,12 @@

    Community Growth

    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.

    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.

    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.

    -

    CodeX experience suggests that different value propositions stakeholders that often apply to different stakeholders. The following generalizes the values to a Use Case for involvement six different types of stakeholders, and the value propositions that often resonate with the same stakeholders.

    +

    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.

    +

    Providers, Health Systems & Associated Specialty Societies

    -

    Value to the SHR initiative of this stakeholder’s engagement

    +

    Value to the specialty standardization initiative of engagement by these stakeholders

    -

    Value to this stakeholder to engage in the SHR Initiative

    +

    Value to these stakeholders to engage in the specialty initiative