The Standard

 
Many have asked the question: When are we going to realize the promises of sequencing the human genome?

Some argue the benefits are here. Others say not much has changed for healthcare consumers and patients. Some have invested in pharmcogenomic programs in the clinic, while there remain pharmacists who say the evidence still isn’t there. Patients see advertisements for cancer services that utilize genetic testing for targeted therapy, while others still claim most cancer patients don’t see any benefit.

We are in a period of both confidence and uncertainty, enough evidence and not enough evidence; let’s move forward with expanded testing and let’s only adopt a few tests, promises and warnings, a cost benefit or just increased cost.

Investments in Genomics Advances

In spite of the controversy, billions of dollars in investments are developing more products and services directed at healthcare consumers. This already includes direct-to-consumer genetic and genomic testing.

The precision medicine initiative is emerging as a high profile effort in genomic research and encourages patient-directed data ownership and sharing. It will be a major driver in building awareness and demand for genetic-based clinical services.

Tools from vendors—that range from biomarker and drug discovery to the clinical knowledge of diagnosis, risk assessment, and clinical meaning—are working toward advancing genetic-based care and realizing greatly improved outcomes.

Amidst this debate, many are committed to moving ahead to find clarity and the right path forward. In increasing numbers, people with day jobs are participating in mostly volunteer organizations to define and complete demonstration projects that prove both clinical utility to healthcare providers and significant value to patients.

Progress in Genomics

Internationally-focused organizations—like the Global Alliance for Genomics and Health (GA4GH), the Global Genomic Medicine Collaborative (G2MC), and US-based activities like the Genetic Alliance, the National Academies DIGITizE action collaborative, NIH grants like IGNITE and eMerge, and HL7 clinical genomics and Fast Healthcare Interoperability Resources (FHIR®)—are all making substantial progress. And there are many more related and critical activities I haven’t listed. Not only do we need to coordinate these activities, but we also need to bring together the diverse stakeholders in academics, research, technology, and national and global policy to see the vision move forward as well as how we’ll get there together.

 
Why FHIR for LATAM?
Latin America (LATAM) arrived on the scene late in terms of the use of earlier HL7 standards. HL7 Version 2 was created in 1985 but we (LATAM) did not begin using it until after 2000). HL7's Clinical Document Architecture (CDA®) was published in 2000 but we  began using it after 2005. HL7's Fast Healthcare Interoperability Resources (FHIR®) is being created now and we are starting to use it in LATAM. Two implementation guides have been developed in Argentina and Colombia; Chile is working on one. We can discuss the ‘we’ (as in ‘Who in LATAM’?), but the trend cannot be discussed.  Some countries in our region have yet to use any standard—there is NO installed base— why get stuck with stuff that’s 10 or 20 years old?

However, work is still in progress. While CDA Release 2 is good for document repositories, when it comes to mobile, what you can/should exchange is more discrete and granular. The choices will come down to how to use FHIR for examples such as:

• Only display allergies
• Only display the lab results for a graph. 

 
A little history

Studying HL7 history, our standards went from a plain text, replication/messaging-based paradigm in the 1980s to the current, Internet 2.0, resource-based paradigm. We also created document-based standards such as the Clinical Document Architecture (CDA®) Release 2 and SOA based standards like Common Terminology Services (CTS).

These 30 years of history gave us a good insight on what we need as standards users and developers.

What do we need as standards users?

People who implement and use standards want open access to standards and implementation guides. They need understandable and short specifications, off-the-shelf tools, reference implementations, friendly representation of information (instances), easy access to vocabularies, automated validation of instances, affordable education, a formal extension mechanism. 

Finally, they need examples, examples, and more examples. They need lots of examples!

What do we need as standards developers?

Standards developers have different needs. They want easy profiling with graphical user interfaces (GUI) and the ability to reuse templates. They also want one-click, automated publishing, validation and QA profiles, validation of instances, global profile registry, and ease of vocabulary binding.

January 1997: my first HL7 working group meeting

It was a dark and cold New England January in 1997 when I came down to my first HL7 working group meeting in Tampa Bay, Florida.

SGML 

I was invited to talk about Standard Generalized Markup Language – SGML – an object of veneration of a small cult that would give the world both HTML and XML, the engines of the World Wide Web and what came to be called ecommerce. To put this in context, the Web was just over 3 years old and XML was still a suckling infant.

It had been announced the previous month, in Boston, simultaneously with a talk on “SGML in Healthcare” by me and clinical co-conspirators, John Spinosa, Dan Essin, and Tom Lincoln. We finished before the XML folks and caught the final few minutes of what we knew meant a dramatic change in electronic information publishing and processing.

Prior to XML, the electronic text world was torn between the advocates of HTML (it’s simple, you can use it!) and SGML (it’s powerful, you can move mountains).  

For the HL7 Tampa talk, billed as a tutorial, I recruited two SGHappyML luminaries – Tim Bray and John McFadden – both Canadian, both showed up with winter colds. Tim was one of the prime movers behind XML; John later a reluctant convert. John had written the OmniMark language for markup conversion and he could actually make SGML work. Tim wrote one of the first programs to index the Web.

HL7 Ed to Go is here!

HL7 has launched an innovative certification preparation tool, HL7 Ed to Go, using the Qstream platform developed at Harvard Medical School. Based on game strategies and interval or “spaced” learning theory, questions are pushed at regular intervals directly to your mobile device.

This interval learning experience increases retention by 170% according to Qstream’s randomized clinical trials. “Brain science shows that even the smartest among us do better when there’s interval reinforcement and active recall of what we need to know,” according to Duncan Lennox, CEO and co-founder of Qstream.

Spaced Learning
Spaced learning has a long history in cognitive research, starting with Hermann Ebbinghaus, a German psychologist who in the late 19^th Century made an important discovery.  His research concluded that spaced learning, learning that is repeated at optimum intervals rather than one intense cram session, increased retention for long periods of time. He is credited with describing the learning curve as it relates to memory and forgetting. Unfortunately there was no practical way of implementing this learning technique until computers could be programmed to do the work of delivering and then re-scheduling the dissemination of information chunks at the appropriate intervals. Qstream has adopted this learning methodology and HL7 is excited to offer it as a new learning tool to help test-takers retain knowledge for greater success when preparing to take a certification exam.

A litte about me

My name is Tim Hricik and I am a consultant with Accenture. I have been with the firm since late 2011 and have been a member of the HL7 community since 2013.

In May, I had the opportunity to attend my first HL7 working group meeting (WGM) in Montreal. As I attempted to navigate the WGM, I was introduced to a fellow Accenture colleague and longtime HL7 leader, Ken McCaslin. Ken is the head of HL7’s Technical Steering Committee and kindly helped shepherd me through the agenda and activities of the WGM. He provided introductions, shared his past experiences, and gave general words of wisdom to help me get the most out of my own experience.

Subsequently, Ken asked if I would write an article that might serve as a guide for future first-time attendees. Wishing that I had had a little more information about the WGM before my first visit, I jumped at the opportunity to share my observations with others. So, for all those attending a WGM for the first time in the near future, here is a little bit about my experience and what you might expect.

What did I anticipate for the working group meeting?

I really had no idea what to expect for my first visit to an HL7 WGM, but I knew that this would likely be different from other types of conferences I had previously attended. My initial intention was to simply attend the Fast Healthcare Interoperability Resources (FHIR®) sessions and connect-a-thon in hopes of learning as much as I could about the emerging standard.

I knew the HL7 organization was actually more than just one standard, but I will admit I let myself get a bit pessimistic about what I would encounter:

• Is this going to be the usual bunch of tech people laboring and debating over dry discussions of standards?
• Am I going to be stuck attending lengthy, drawn out lectures, struggling to maintain interest and attention?
• Will it be relevant to my interest areas and career development?

The Power of Community in HL7

I first became involved with HL7 a decade ago as I transitioned from medical practice to clinical informatics. I attended my first HL7 meeting, as many do, to take advantage of the tutorial sessions offered around foundational standards like HL7 Version 2 and the Clinical Document Architecture (CDA®).  The most valuable takeaway from that first meeting however was not the knowledge of the standards but the beginning of my relationship with the community of individuals who are HL7.

HL7 is a diverse community

It is a remarkable community of individuals that are as diverse as the countries they call home, the organizations that employ them, and their backgrounds of education and experience. The one thing that is common and shared across the community is the sense that we move the needle as a community; move the needle a little with each use case enabled with an HL7 standard and each project that ends with consensus on a new data standard.

Q&A With Bryn Lewis, PhD

First Place Winner of the HL7 C-CDA® Rendering Tool Challenge

On Tuesday, September 12, HL7 announced the winners of the HL7 Consolidated Clinical Document Architecture (C-CDA®) Rendering Tool Challenge. 

Bryn Lewis, PhD, a principal software development consultant at Intelsoft in Melbourne, Australia, developed the award-winning tool, Intelsoft C-CDA Viewer. Dr. Lewis's tool is an easy-to-use viewer of complex C-CDA documents available in any web browser.

C-CDA® Rendering Tool Challenge Background

Many clinicians are frustrated with the usability of C-CDA documents. Currently, an overabundance of data is rendered and sent to providers, requiring them to spend time sorting through data that is not relevant to their immediate needs.

HL7 and the Office of the National Coordinator for Health Information Technology (ONC) addressed this need by issuing a tool challenge to develop a viewer to enable clinicians to select the C-CDA document data most clinically relevant to them and display such data in an order they prefer.

The tool was required to meet the following criteria:

• Render the data as specified by the clinician thereby allowing him/her to quickly review the current health and needs of the patient
• Present requested data quickly and clearly through section-based view preferences (ordering), filter functions, intelligent sorting or some other functionality

Dr. Lewis was kind enough to share answers to the following questions ... 

HL7 FHIR: A Standard You Can Use Today! 

A Recap of the HL7 FHIR Applications Roundtable

“A standard is not used because we created it. It is a standard because people use it.”

This familiar quote from Charles Jaffe, MD, PhD, CEO of HL7, could have been the motto for the inaugural FHIR Applications Roundtable held this July at Harvard Medical School in Boston.

As so many of the smiling attendees attested, this was indeed a very different kind of meeting.
The premise was to show how widespread HL7 Fast Healthcare Interoperability Resources (FHIR®) usage already is, and the answer was – more than we could have ever imagined.

The FHIR is spreading

Although FHIR is currently designated as a Standard for Trial Use (STU), it has already captivated the development community who is drawn to its advanced, elegant technology platform. The roundtable, like most FHIR events, cements the impression that interoperability through FHIR is not a pipe dream, but a burgeoning reality.

What is the role of HL7 standards in the eHealth Digital Services Infrastructure (eHDSI)?

eHDSI calls for EU-wide specifications and national extensions or localizations. Interoperability assets and shared terminology resources supporting HL7 standards adoption are needed to streamline large scale eHealth deployment at a reasonable time and cost.

The eStandards project, led by the HL7 Foundation, aims to create a roadmap for collaborative eStandards development fit for the purpose of large scale eHealth deployment. CEN/TC251 and IHE Europe participate in the eStandards project along with key eHealth stakeholders in Europe.

In view of these developments, it is worth reflection on:

• How should HL7 standards be promoted at the national and European level?
• What kind of tools and resources can HL7 offer to support its European members?
• What synergies does HL7 need to engage in Europe?