Track 1. Community Building
Gathering the right organizations and people is the most challenging, foundational, and necessary step on the path to success.
Enabling true health data interoperability is as much a social challenge as it is a medical or technical challenge. It takes people who share a vision and mission, can align diverse viewpoints, and gather the resources necessary to change the status quo and establish sustainable growth.
Actions that CodeX has found indispensable in establishing and building a community include (a) engaging champions, (b) establishing governance, (c) enabling growth, and (d) communicating value propositions.
Champions
Identifying specialty champions is an essential first step when starting a new specialty initiative or starting a new use case within that initiative. In CodeX, successful champions are organizations and individuals that:
- Commit to leading the initiative and/or use case
- Know the challenges and opportunities (leading to potential use cases), organizations, people, and related initiatives within the larger specialty community
- Command the attention of a larger community and can influence future users and stakeholders to engage
- Motivate implementation of new standards into vendor solutions
- Encourage changes in health processes that use and benefit from standards-based systems
- Attract the resources needed to succeed
- Drive one or more key tracks of the initiative and/or use case: Community Building, Use Case & Planning, Standards Development, Implementation & Testing, Adoption & Value
Champions and all who actively participate will best understand the challenges that standards-based data interoperability solutions can solve. These participants will share vision for a future where patient data can be collected once, shared, and reused no or little manipulation for patient care, research, and other applications.
Champions have significant responsibilities, but they also help guide initiatives toward a better future by prioritizing use cases, defining direction, achieving objectives, and ultimately improving healthcare within their organizations and across the landscape.
Large, medical professional societies and government organizations have been the most common CodeX use case champions, though other stakeholders have also been effective. The founding champions for the overall CodeX initiative (which started by addressing challenges in oncology) 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.
Governance
A governance framework is important for any initiative involving organizations with divergent interests and views. A member organization backed governance framework ensures that the community hears and understands participants' views and interests. Governance delineates how and by whom decisions are taken and provide guidance on updates to the governance structure itself, membership structure and fees, resolving conflicts, administrative support, developing new use cases, and allocating community resources to projects.
The CodeX Accelerator provides the governance for use cases around cancer (and the mCODE standard), cardiovascular disease, and genomics. Other governance schemes are possible but would require more effort to start and to coordinate effectively across specialties.
The graphic below captures the CodeX governance structure as of 2024. The tiered structure offers participation at different levels of responsibility and time commitment. Further details of the current CodeX governance scheme can be found on their website.
Regarding CodeX Governance: The elected steering committee makes major decisions including, governance structure, use cases, funding decisions, and moving projects into the execution stage. The vast majority of all the community's volunteer resources are invested in the use case projects. The community of practice (near the bottom of the graphic) is open to the public and has been an effective feeder of new organizations and talents into CodeX membership and use cases.
One key factor in CodeX's oncology work is the mCODE Executive Committee and its Technical Review Group (“External Expert Groups” circle on right). These groups provide clinical subject matter expertise across oncology fields and ensure the mCODE FHIR Implementation Guide is based on the most credible and recent clinical knowledge.
A strategy for sustaining work is important. Communities cannot achieve success overnight and cannot continue to achieve success without sustained resourcing. In CodeX, participants provide the range of skills and support necessary to drive each use case forward. Funding for overarching program management (near the top of the graphic above) comes largely from membership fees. Based on 2024 CodeX (membership) and (fee structure), membership fees provided about $800K (USD) for 2024.
Community Growth
To advance use cases, the community needs a variety of organizations and skillsets to establish an overarching vision of adoption and real-world value. Thus, the community must have participants with direct experience related to each of the envisioned roles in the specialty initiative and its use cases.
For example, in the CodeX Radiation Therapy Case Study, the team included participants from radiation therapy societies, health systems, payers, and vendors. Key skillsets and roles included clinical practice, radiation oncologists, radiation physicists, software engineers, informaticists, FHIR experts, and HL7 standards process experts. Gathering the right set of people together at the right time is challenging. Therefore, it is ideal to have redundancy among these roles, to bring in a diversity of experience and to provide forward momentum as participants cycle on and off the project. Champion leadership and collaboration as a committed and focused team is critical.
The good news is that compelling use cases will attract new participants. These participants value of the community's work, are willing to invest resources to realize that value, and want their experience and expertise to be reflected in use case decisions and the final product.
Value Propositions
To grow the community required for a standards initiative to succeed, it is important to understand and communicate the value propositions for different stakeholder groups. Further, stakeholder value should be bidirectional and framed as: (a) How can the standards initiative provide value to stakeholders, and (b) How stakeholders provide value to the standards initiative?
Below are value statements, looking in both directions, for six stakeholder groups:
Providers, Health Systems & Associated Specialty Societies
How can the standards initiative provide value to providers, health systems, and associated specialty societies?
- The initiative's use cases enable better care at lower cost. More accurate and complete data that can be collected and shared more readily can improve diagnoses, treatment, consultations, automation and reduce the level of effort and expenses of community members.
- The realization of shared decision-making between patients and providers.
- Valuable secondary uses of the standards-based data could be realized (e.g., quality measure reporting, payer communications, prior authorization procedures, research, and many other opportunities).
How can providers, health systems, and associated specialty societies provide value to the standards initiative?
- By representing, informing, and convincing a broad group of clinical and administrative constituents to support the initiative.
- By committing experts who can provide deep clinical knowledge.
- By demanding standards-based solutions from their vendors.
- By finding and providing funding.
Regulators (government agencies may include functions that fit into other stakeholder groups, as well)
How can the standards initiative provide value to Regulators
- Standards that are developed can align with and accelerate government rules and regulations.
How can Regulators provide value to the standards initiative?
- By committing experts who can provide deep regulatory knowledge.
- By issuing rules/regulations that require adoption of standards, which could also help build Community around and propel standards initiatives.
- By providing funding.
Patients & Associated Advocate Societies
How can the standards initiative provide value to patients and associated advocate societies?
- By enabling better patient care and lower costs through more accurate and complete data collection and improved data sharing.
- A common motto of CodeX work is that “every patient’s journey improves all future care” in addition to providing excellent care to the patient at hand.
- The realization of shared decision-making between patients and providers.
How can patients and associated advocate societies provide value to the standards initiative?
- By representing, informing, and convincing a broad group of patients and caregivers.
- By providing the patient's perspective to ensure a patient-centered approach is at the center of use cases and standards work.
- Patients will increasingly demand the ability to aggregate, share, and control their health data, motivating standards adoption.
Regulators (government agencies may include functions that fit into other stakeholder groups, as well)
How can the standards initiative provide value to Regulators
- Standards that are developed can align with and accelerate government rules and regulations.
How can Regulators provide value to the standards initiative?
- By committing experts who can provide deep regulatory knowledge.
- By issuing rules/regulations that require adoption of standards, which could also help build Community around and propel standards initiatives.
- By providing funding.
Vendors (EHR and other health IT companies)
How can the standards initiative provide value to vendors?
- Vendors can help align customer interests and thus reduce their level of effort on custom implementations.
- They can provide input to ensure standards are implementable in their systems and consistent across specialties, reducing costs associated with development and maintenance.
- Vendors who participate actively have a first-mover advantage that can provide a competitive advantage.
How can vendors provide value to the standards initiative?
- By implementing and delivering standards-based solution that their customers have requested.
- By committing experts who can provide deep technical implementation knowledge.
- By looking across customers and specialties to suggest ways to harmonize standards in order to optimize implementation, use, and maintenance within systems.
- By providing funding.
Payers
How can the standards initiative provide value to payers?
- Easier access to necessary clinical data, standardized across customers needed to make decisions.
- Automation of processes (e.g., prior authorization, claims processing).
- Higher quality care, supported by standard data, will be informed by payers who are at the forefront of pay-for-value approaches to care.
How can payers provide value to the standards initiative?
- Can demand the use of standards by associated health systems and vendors.
- By committing experts who can provide deep knowledge of payer requirements.
- By demanding standards-based solutions from vendors.
- By providing funding.
Researchers
How can the standards initiative provide value to researchers?
- More patient point-of-care data can be gathered and aggregated faster and with less expense for research use (e.g., less data curation and mapping).
- Substantially increased speed, ease of execution, and cost-effectiveness through standardized data sharing across studies and institutions.
- Potential funding.
How can researchers provide value to the standards initiative?
- By committing experts who can provide deep knowledge of research requirements.
- By demanding standards-based solutions from their vendors.
- By providing funding.