The Standard

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.

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.  

Doing Less, but Better

Imagine you’re struggling in a long race – maybe an ultra-marathon over a winding, hilly course. You’ve been running for many hours, and you’re tired, sore and hungry. You’re running up a hill, hoping the end will soon be in sight. But when you get to the top, you only see a turn, not a finish. And after that turn – oh, no! – another hill. We’ve had that feeling during the long pandemic, and, for some of us, we’ve had that feeling even longer with respect to tooling at HL7. We’ve covered a lot of ground, and climbed a lot of hills, and we can feel the end should be in sight very soon. But we’re still running.

Fortunately, we have a team of supporters handing out Gatorade, clapping and cheering us on, and we’ve got our fellow runners pulling us along. And so it is with the HL7 community. We ask a lot of you to help us move forward, with support and understanding; sometimes contributing your valuable time to help us with development or testing, or to struggle patiently with change and the unexpected discoveries of new technology rollouts. While we don’t see that finish line yet, we see plenty of blue skies and greener fields beyond. We won’t always make it on the podium, and sometimes we stumble along the way. But the important thing is to keep moving forward and getting better.

The View from Above

We may not always seem to be progressing very fast, but we’ve really come a long way in the last few years thanks to the important contributions of many of you as well as the ongoing generous support of the US Office of the National Coordinator for Health IT (ONC), which has funded many of our retooling efforts. To list a few prominent examples:

Doing Less, but Better

For many of us, this desperate pandemic year has led to plenty of introspection.  This has also been true for the HL7 Board, which has been contemplating the future of the HL7 organization after emerging from the current crisis. Among a set of core principles adopted by the Board are agility and focus. To be agile, we need to simplify and refine the organization and core processes as well as provide support with continued improvements to our tooling. This also requires getting our global community to better understand and use the processes more consistently and effectively, so we can better focus on our core work of developing and implementing interoperability standards.  This a perfect segue back toward my long-held core belief in essentialism.

Back to Basics

I first espoused the concept of essentialism to an enthusiastic Board and Technical Steering Committee back in 2016. While we’ve only made small incremental progress in the four years since, it has been guiding our process improvement and tooling initiatives. Essentialism was a driving force behind our adoption of Confluence and JIRA as well as efforts to simplify our product portfolio. Of course, we operate in a complex field, and there were many confounding forces acting at the same time. The HL7 community is more adept at introducing new processes, tools and content than at retiring or eliminating the old stuff. Thus, our commitment to essentialism faded over time, tempered by inertia and continuing demands, not the least of which has been the black swan events of 2020.

Perhaps it’s time to once again review the key elements of essentialism and discuss how it fits with our ongoing tooling strategy and plans.

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