The Standard

Five new Steering Committee members will bring unique insights to an upcoming slate of HL7 FHIR use cases in oncology, cardiovascular health, and genomics.

CodeX, the HL7® Fast Healthcare Interoperability Resources (FHIR®) Accelerator™ working to advance the adoption of FHIR as the standard to obtain high-quality, computable data for patient care and research, including the domains of oncology, cardiovascular health, and genomics, announced an expanded steering committee and new members of its leadership team.

“These experts in their fields are committed to helping CodeX develop and implement a strategic vision for the future with integrity, fairness, and equity. We embrace the HL7 ethos of collaboration and community to collectively solve interoperability challenges,” said Su Chen, M.D., program manager and clinical director of CodeX & digital health clinical principal at MITRE. In her role, Chen serves as chair of the CodeX Steering Committee.

Two CodeX HL7 FHIR Accelerator use case teams are hosting monthly public calls to involve a broad community in early prototype development and pilot planning activities currently underway.

The CodeX HL7 FHIR Accelerator will host three public calls next week covering project milestones in the Radiation Therapy Treatment Data (RTTD), Risk Evaluation and Mitigation Strategies[i] (REMS) and Prior Authorization in Oncology use cases.

• Join the CodeX Prior Authorization in Oncology team on February 15 (3-4 ET) for an update on its radiation oncology pilot planning. Use case team members will discuss progress relative to breast and prostate cancer patient demographic and clinical data elements discovery and health data standards mapping (e.g., mCODE and Da Vinci Project implementation guides). Find call information here.  
• Join the RTTD team on February 16 (11-12 ET) when they will share recent project achievements, including experience exchanging synthetic patient data using mCODE from a radiation oncology information test system to a FHIR server. Find call information here.
• Join the CodeX REMS team on February 17 (1-2 ET) to explore the value of an interoperable REMS ecosystem using FHIR and other health data standards, view details of the open source REMS on FHIR prototype under development and discuss CodeX membership details and benefits, including driving the REMS use case work forward. Find call information here.

The CodeX team believes the Minimal Common Oncology Data Elements (mCODE™) standard could be leveraged to achieve more equitable health outcomes for cancer patients from diverse populations. As part of our exploration, we are releasing a white paper, “Advancing Health Equity in Cancer Research, Care, and Surveillance,” available here and will host a companion webinar, "Leveraging Interoperability to Drive Health Equity in Cancer Care, Research and Surveillance." Please join us on January 27, 2022 at 1PM ET by registering here.

Weclome to CodeX's New Patient Voices Series!

CodeX recently talked with cancer patients, survivors, and advocates to hear their stories and learn more about their perspective through the cancer care coordination process. CodeX (Common Oncology Data  Elements eXtensions) is a HL7 FHIR Accelerator, launched at the end of 2019, that is building a community to enable interoperable cancer data modeling and applications that lead to step-change improvements in cancer patient care and research.  

How is the Standard of Care Defined?

“Everyone just said this is the standard of care!” Today, Desiree D. has no evidence of disease, but in 2017 she was diagnosed with stage 2b breast cancer at the age of 40. When trying to make decisions about her course of treatment, Desiree was repeatedly told by doctors that she was getting the standard of care. In reality, the “standard of care” is relatively loose terminology. When making treatment decisions, Desiree felt that the standard of care where she was living in Virginia meant something different than the standard of care in Massachusetts or the standard of care in Vermont. 

Imagine if a chef could not make a soup because he only understood Portuguese and the soup’s instructions were in Hindi. The chef could look elsewhere and find a solution after further research; however, the lack of a common language has cost the chef time and the chef’s soup is not going to be the same as he wished. This scenario is harmless, but a similar and much more serious situation exists across healthcare systems. The healthcare industry remains significantly less standardized than other industries. This means that treatments for the same type of cancer might vary greatly by geographic location, cancer center, and even oncologist in part because healthcare data is not collected or shared in a standard manner.

Weclome to CodeX's New Patient Voices Series!

CodeX recently talked with cancer patients, survivors, and advocates to hear their stories and learn more about their perspective through the cancer care coordination process. CodeX (Common Oncology Data  Elements eXtensions) is a HL7 FHIR Accelerator, launched at the end of 2019, that is building a community to enable interoperable cancer data modeling and applications that lead to step-change improvements in cancer patient care and research.  

Bias in Healthcare is Deadly

“It’s almost like negligent homicide. Because of the bias that’s there—whether it’s explicit or implicit—is resulting in these people—patients of color—not receiving the full scope of care that they should be.” Jamil Rivers is a person with breast cancer and the Founder of The Chrysalis Initiative.

The Chrysalis Initiative is a patient advocacy organization looking to disrupt harmful disparities in accessibility, quality and outcome of cancer care. Looking at the source of disparities is the first step to rectifying them, and The Chrysalis Initiative provides equity assessments that evaluate all types of healthcare services that offer cancer care. The assessments evaluate whether the experiences of patients of color differ from White patients. When Jamil first started the equity assessments, she expected around 50% of patients of color to experience racism and bias. However, Jamil quickly discovered that this number was much higher. “90% of our preliminary data indicated that they [patients of color] were receiving substandard care and experiencing racism and bias in their care.” According to Jamil, many medical providers and researchers are cognizant of racism and bias affecting patients, but few understand the true pervasiveness of explicit and implicit racism in patient care. Even biases that at first glance seem trivial can be deadly because each action based upon bias deteriorates the quality of care a patient receives.

Weclome to CodeX's New Patient Voices Series!

CodeX recently talked with cancer patients, survivors, and advocates to hear their stories and learn more about their perspective through the cancer care coordination process. CodeX (Common Oncology Data  Elements eXtensions) is a HL7 FHIR Accelerator, launched at the end of 2019, that is building a community to enable interoperable cancer data modeling and applications that lead to step-change improvements in cancer patient care and research.  

Creating Patient-Centered Care

“We see patient-centered care as the patient is in the center, fully alert, fully informed, and fully able to contribute to the information as well as what [treatment] they want to happen in their lives.” Debi Willis is a kidney cancer survivor and the CEO and Founder of PatientLink and MyLinks. The phrase “patient-centered care” is frequently mentioned, but what do these words really mean? According to Debi, patient-centered care is sometimes mistakenly interpreted as having multiple medical professionals focusing on a single patient where the patient has little understanding nor input in decisions that are made. Instead, “patient-centered care” should involve the patient in all decision making and ensure that the patient understands all decisions that are made throughout the care process.

In the early 90s, Debi worked at the Federal Reserve Bank of Kansas City as a software engineer. She noticed that the financial sector was highly automated, but the healthcare industry was almost completely reliant on manual entry of data. Medical providers who switched to using EHR (Electronic Health Record) systems found them tedious and difficult to use. To explore the new field, Debi switched from the banking technology industry to medical technology and created software that would allow patients to easily send their information into their physician’s medical record as structured data. This allowed the physician to focus on their patient instead of typing into the EHR. Although it wasn’t in her initial plans, the demand for her technology from medical providers led her to launch PatientLink.