The Standard

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.

HL7's Chief Technology Officer, Wayne Kubick, will retire  at the end of this year. We want to take this opportunity to formally announce it and begin recognizing the many accomplishments and contributions he made to the betterment of HL7 International and its entire global community.

Wayne's responsibilities will be assumed by two new C-level officer positions, a Chief Standards Officer and Chief Implementation Officer, and he will remain in an advisory role into early 2022 to support the transition. 

We would like to express our deepest appreciation and thank Wayne for his dedication and unparalleled commitment to HL7 International over the past six years. His leadership has been instrumental in advancing HL7’s mission and vision of a world in which everyone can securely access and use the right health data when and where it is needed.

If there is one word that describes Wayne’s work philosophy at HL7, it is Essentialism. He introduced us to the concept when he joined the organization and has been a staunch proponent of incorporating Essentialism across the board, encouraging the organization to focus its efforts on its highest contributions to the industry while letting go of non-essential work.

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.

Sessions at HIMSS21 Offer Glimpses into Progress, Potential New Uses for the Standard

After a hiatus of nearly 18 months, a slimmed-down, COVID-sensitive HIMSS 2021 Conference still managed to provide extensive insights into several major trends within the healthcare IT industry.

Along the dual tracks of federal regulations forbidding information blocking and the need for improved data exchange to facilitate, there were many discussions about the capabilities of HL7® Fast Healthcare Interoperability Resources (FHIR®) to support the industry.

The HL7 FHIR community had opportunities at the conference’s Interoperability Showcase to update the industry on dramatic progress by its accelerator groups to advance the use of FHIR in areas where data exchange is essential.

In July 2021, the Centers for Medicare & Medicaid Services (CMS) hosted its second HL7® FHIR® Connectathon, welcoming over 800 participants from Federal agencies, payer organizations, and the health IT industry to a three-day event with more than 70 presentations focusing on education, implementation guide testing, and community-building around Fast Healthcare Interoperability Resources (FHIR)-based application programming interfaces (APIs).

Federal health agencies have entered an era where data interoperability-enabled solutions play a critical role. Government leaders can harness the innovative and proven capabilities referenced in this article to deliver on their essential missions.

Background

In 2020, two major events laid the foundation for this era of interoperability.

Pandemic Response: The first was the coronavirus pandemic, which led to unprecedented needs for health data in support of agency missions. Since its start, decision-makers have required more access to and insights from these data (e.g., clinical records, administrative claims, patient experience) than ever before.

Interoperability Rules: The second was the finalization of the ONC and CMS-led 21^st Century Cures Act interoperability rules. These mandates substantially expanded agencies’ ability to leverage health data solutions (e.g., algorithms, applications, and automation) at scale.

Déjà Vu All Over Again

My last tooling update was titled Focus on Finishing. Thus, in homage to the inimitable Yogi Berra, it would be hypocrisy to change focus now. Focus on Finishing is still the principal theme for the year, building on essentialism, my other guiding light, as expressed in the axiom “Do less, better.”

Toward that end, we continue to move ahead with our transition to our core collaboration tool stack and processes based on workflow-driven online forms. As of this writing, we’re completing final improvements to make the online PSS available to all later this spring. We’ll be working to finish automating most other key form-driven processes after that.

In addition, we hope to finish our transition to a new JIRA-based balloting system, which is also being piloted as of this writing. This, together with the recent transition from GForge Tracker and the STU Feedback web page to JIRA, puts all of our specification feedback in one repository moving forward.

While finishing our transition for balloting is critically important, we also have to update and replace some peripheral systems supporting the balloting process for members, as well as our core business systems for managing membership, events and operations. While we don’t expect to complete this transition to a new Association Management System before the end of 2021, we’ll be focused on finishing this as rapidly as possible since it’s an essential foundation to further systems improvements for the HL7 organization.