The Standard

From digital check-ins to connected devices and telehealth programs, patients expect the benefits of a more digitized healthcare experience.

 At the same time, they’re also demanding a more personalized approach from healthcare providers. This duality - the need to provide a more convenient experience with one that’s more tailored to the patient - is fueling a wave of technology modernization efforts and the replacement of monolithic legacy IT systems.

 With limited re-use outside of the context they were built for and a reliance on nightly batch processing, legacy IT systems fail to deliver the services healthcare IT teams need or provide the experiences patients demand. Modernization should come with a move to microservices that can be used by multiple applications, agile teams that embrace domain driven design principles, and event busses like Kafka to deliver real-time data and functionality to users.

While this transformation is occurring, there’s an 800 lb. gorilla not being widely addressed:  Analytics.

 What the healthcare industry doesn’t want to talk about is how costly analytics has become; the people, the software, the infrastructure, and particularly how difficult it is to move data in and out of data lakes and warehouses. It's hindering the industry’s ability to deliver insights to patients and providers in a timely and efficient manner.

And yet, so many organizations are modernizing their analytics data warehouses and data lakes with an approach that simply updates the underlying technology. It’s a lift-and-shift effort of tremendous scale and cost, but one that is not addressing the underlying issues preventing the speedy delivery of meaningful insights.

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).

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.

Health Level Seven® (HL7®) International recently announced the appointment of three new members to the HL7 board of directors to serve a two-year term: Lori Evans Bernstein, MPH, co-founder and president, HealthReveal; Karen DeSalvo, M.D., MPH, chief health officer, Google Health; and Carolyn Petersen, MS, MBI, FAMIA, senior editor, Mayo Clinic.

“These leaders represent a broad spectrum of global stakeholders who are committed to advancing health through information technology. We are delighted to welcome them to the HL7 board of directors,” said Charles Jaffe, M.D., Ph.D., CEO of HL7. “Their strategic expertise and diverse experience will contribute greatly to HL7’s goal of improving the quality of care and reducing costs by overcoming the barriers to interoperability.”

The CDA Management Group (CMG) aims to use the next C-CDA Implementation-A-Thon (IAT) to expand outreach to engage new communities and increase the impact of this content improvement effort.  “We learned so much last year about how to maximize the value of implementer-led implementation-a-thons,” said CMG Co-Chair Lisa Nelson. “The new approach was a step in the right direction. It helped implementers drive the conversation and focus the community on making changes that would yield valuable improvements,” she explained.  

The Centers for Medicare & Medicaid Services (CMS) released the much-awaited Interoperability & Patient Access Rule in March 2020. The objective is to reinforce this rule by further improving health information exchange and obtaining member health records at a single location to reduce burden on payers, providers and members.

The enforcement date for this rule is January 1, 2023, and will be applicable to Medicaid programs, the Children’s Health Insurance Programs (CHIP) and Qualified Health Plan (QHP) issuers on the individual market Federally Facilitated Exchanges (FFEs). However, it will not be applicable to Medicare Advantage (MA) plans.

The CMS proposed rule will include policies to enhance the current Application Programming Interfaces (APIs) from its interoperability rule such as patient access API and payer to payer API. There are a few new APIs and requirements proposed to improve the overall prior authorization process.

Clinical care data is a foundation for research. It is used to understand patient populations and as the core for clinical data capture. The introduction of HL7 Fast Healthcare Interoperability Resources (FHIR®) and its adoption rate creates a new opportunity to exchange data for clinical and translational research. Building off the work already accomplished to create interoperability standards for the exchange of healthcare data bridges clinical research into the greater healthcare ecosystem.

HL7 FHIR® accelerators have been a successful catalyst for standards development and adoption. Following the path of other accelerators, the research community collaborated to create Vulcan. In August 2020, Vulcan was launched by convening the following member organizations: TransCelerate Biopharma, Duke University, Johns Hopkins, Oregon Health and Sciences University, UT Health San Antonio, Society for Clinical Data Management, U.S. National Library of Medicine, National Center for Advancing Translational Sciences (NCATS), Danish Medicines Agency and U.S. Food and Drug Administration. Membership is rapidly growing with new organizations being onboarded each month.

Vulcan Use Cases

After consultation with the Steering and Operations Committee of Vulcan, project teams have been formed to move forward three use cases. These were selected from a larger effort to collect as many as eighteen uses cases which were prioritized based on impact and the ability to deliver to the community. The initial selected use cases include:

• Real world data (including secondary use of electronic health record data)
• Phenopackets
• Schedule of activities