According to the next generation of healthcare transformation leaders, data democratization is mission critical for the future of improvement. High school student Justin Aronson explains how he leverages open-source health laboratory data to build a tool that improves the clinical interpretation of sequenced genetic variants. Aronson’s cloud-based data integration and visualization system, Variant Explorer, runs on genomic and phenotype data that’s feely accessible on the public archive ClinVar. He says that large-scale data democratization is the key to current and future healthcare problem solving.

1. Justin Aronson:
A High School Student and HAS 19
Keynote Who’s Transforming the
Understanding of Genetic Variants

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JUSTIN ARONSON
HAS 19 Keynote Presenter
Justin Aronson – Future Healthcare Disruptor
This presentation introduces Justin Aronson, an exceptional 10th
grader and HAS 19 Keynote presenter who is transforming the
understanding of genetic variants. Although Aronson credits geneticist
mentors with his accomplishments, the resulting success is grounded
in his data tool – Variant Explorer.

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Will data democratization truly transform healthcare?
According to a representative from a
future generation of healthcare disruptors,
the answer is clearly yes.
Justin Aronson – Future Healthcare Disruptor

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In 2014, high school student and HAS 19 keynote
presenter Justin Aronson launched Variant
Explorer, a cloud-based data integration and
visualization system for improving the clinical
interpretation of sequenced genetic variants.
Aronson credits expert mentors (geneticists Heidi
Rheim and Steven Harris) with his achievement,
but he says that the real determinant in Variant
Explorer’s success is the data he accessed
thanks to his data resource’s commitment to
open sourcing its asset.
Justin Aronson – Future Healthcare Disruptor

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Aronson built Variant Explorer on genomic and
phenotype data from the archive ClinVar.
As a freely accessible, public record of reports of
the relationships among human variations and
phenotypes, ClinVar provides public access to
information about the relationships between
human variation and observed health status.
From Open Source to User Experience

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Through displays and data processing, Variant
Explorer helps healthcare organizations identify
variations in relationships (i.e., conflicts between
labs) among the genomic variants and
phenotypes, which labs, researchers, and other
clinicians submit to ClinVar.
From Open Source to User Experience

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The Variant Explorer homepage prioritizes user
experience with three accessible tabs tailored to users:
• Search by Submitter
• Show Submitter Mega Table
• Search by Significance
From Open Source to User Experience

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The tabs make data accessible, and a
conflict discrepancy table helps break
down data and shows conflict with a
high-level overview.
Labs visualize and recognize conflicts
with other labs and can fix them within
own organizations or reach out to others
to fix conflicts, with the end goal of
improving patient care.
From Open Source to User Experience

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Aronson is now looking to machine learning
to increase Variant Explorer functionality.
Specifically, he aims to reformat ClinVar
data to make it more conducive to machine
learning and then leverage the advanced
analytics capability to show more
sophisticated relationships between
disparate lab data.
Aronson says that ClinVare data is currently
extremely complex, and while a great
resource for labs to see a lot of information,
it doesn’t support machine learning.
An Eye on Machine Learning

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By simplifying ClinVar data structure for
machine learning use with Variant Explorer,
Aronson would also open source the data for
other users to leverage machine learning.
Skeptics in the data community have told
Aronson that his machine learning goal is
too ambitious, but he’s moving forward with
an eye to the future.
An Eye on Machine Learning
Maybe it doesn’t work out but I think that even
by failing at incorporating machine learning in
Variant Explorer, I’ll learn a lot more about
machine learning and be able to use it for
[other] projects.”
- Justin Aronson

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Aronson explains that the ClinVar commitment
to data democratization has not only enabled
his work with Variant Explorer but serves as a
great example of how open-source data is key
to solving and facing the increasingly complex
problems of today and future.
Data Democratization Will Drive the
Future of Healthcare
I hope these larger corporations embrace data
democratization because I think it’s key to how
we, as a society, will move forward,”
- Justin Aronson

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For more information:
“This book is a fantastic piece of work”
– Robert Lindeman MD, FAAP, Chief Physician Quality Officer

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