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.
The Organization Welcomes Daniel Vreeman, D.P.T., Viet Nguyen, M.D., and Diego Kaminker
The Next Generation Standard Has Transformed Health Information Technology Across the Globe
HL7 Fast Healthcare Interoperability Resources (FHIR®), the widely adopted, open-source standard from the HL7 International community, celebrates 10 years of international development and implementation. With the ability to streamline the many variations in health information technology (HIT) systems and the capacity to accommodate modern technology, FHIR is at the forefront of healthcare interoperability. In keeping with HL7’s vision of a world where access to health data is readily available to everyone whenever and wherever it is needed, FHIR creates connections between different parts of the healthcare system to facilitate the secure, real-time exchange of data and, ultimately, improve patient care.
Since its inception, FHIR has fostered a collaborative culture. HL7 International Chief Executive Officer Charles Jaffe, M.D., Ph.D., recalls, "The development and adoption of FHIR was advanced by a remarkable and committed international community. The impact that FHIR has had on global healthcare was driven by an unprecedented level of collaboration that today continues to grow." Grahame Grieve, principal at Health Intersections, FHIR product director at HL7 and the inventor of FHIR, agrees. “Most people think about FHIR as a technical specification, but I look at it first of all as a community.”
Alliance of government, private sector and philanthropic partners aims to use widely accepted healthcare standard to help advance public health
A new initiative launched by HL7 and jointly supported by the Centers for Disease Control and Prevention (CDC) and the Office of the National Coordinator for Health IT (ONC) seeks to use widely recognized data exchange standards to help advance public health. The effort, called Helios, intends to strengthen the capacity and streamline data sharing across all levels of public health using the HL7 Fast Healthcare Interoperability (FHIR®) standard.
“Public health has risen in urgency and importance over the last 18 months,” said the ONC’s National Coordinator for Health IT Micky Tripathi, PhD, MPP, “FHIR accelerators have had great success in engaging implementers as early as possible to help identify and overcome longstanding barriers to interoperability. The Helios alliance is a market-based implementation collaboration that will help to ensure FHIR development is coordinated and focused on real world public health needs.”
The initiative is the latest to use HL7’s FHIR Accelerator program, which seeks to speed the development and availability of FHIR to deliver better data that leads to better health outcomes. The Helios alliance represents an ambitious new use of the FHIR Accelerator program, pulling together a diverse group of state, tribal, local, territorial, and Federal public health agencies, private and philanthropic sector partners, and other groups interested in the equitable and effective use of data for the advancement of public health.
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.