As patient data because one of the healthcare industry’s most valuable assets, organizations are establishing new practices around accessing and handling data. In question is the practice of de-identifying patient data for widespread cross-organizational data collaboration without compromising patient privacy. But because deeper and richer data drives better clinical understanding and, ultimately, better outcomes, does separating patients from their health data and how it’s used give researchers and developers the best insights? Or do data users risk losing critical connection with the patients and insights into therapies their lives, disease, treatments, and deaths that contribute to new therapeutic approaches? It’s time to consider a progressive approach to patient data that keeps the patients involved by informing them when and how their data is used to earn trust and engagement, making patients partners in data-driven healthcare transformation.

1. Creating a Data-Driven
Research Ecosystem with
Patients at the Center

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Elia Stupka, PhD
Senior Vice President and
Chief Quality Officer
Editor’s Note: This article was first published on January 23, 2020 on Pharma Boardroom.
Creating a Data-Driven Research Ecosystem

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Creating a Data-Driven Research Ecosystem
Healthcare data is seen by many
as the ‘new goldmine,’ with many
businesses in this field evaluated
and sold at a significant value.
The underlying premise is that once
the data is fully de-identified it can
be used by third parties for purposes
other than the standard of care,
empowering discoveries, etc.

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Creating a Data-Driven Research Ecosystem
This has led most pharma companies
to invest heavily in ‘Real World Data’
departments, which purchase, aggregate
and analyse data to derive insights and
better inform value-based models.
Last but not least, de-identification offers
a way to collaborate across provider
organisations effectively, as Health
Catalyst already does for its customer
base that is comprised of hospitals in the
US and around the world.

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Creating a Data-Driven Research Ecosystem
And yet, when we talk about healthcare
data, we are ultimately talking about
patient data, their lives, their disease,
their treatments, their deaths.
And often they are kept out of the loop,
not benefitting or engaging with how
their data is being used.
Patients are increasingly demanding
a more active involvement in their
health, which is difficult to adhere to
when the patient data is de-identified.

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Creating a Data-Driven Research Ecosystem
As individuals become increasingly
aware of how their data is handled, we
will need to evolve towards models that
engage the patients and ensure that,
wherever possible, they are informed
about projects involving their data, and
can receive some value back.
Many companies are now moving to
provide services in this area, including
those with the ability to retrieve a
patient’s medical records or engage
patients through peer-to-peer
communities.

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Creating a Data-Driven Research Ecosystem
As the model has taken ground, health-
care data has evolved to become its
own asset class.
When surveyed, most patients are
willing to donate their data to research,
but they are more enthusiastic about
donating when they can learn:
1. How their data has benefitted others
affected by the same disease, or:
2. The future of research.

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Creating a Data-Driven Research Ecosystem
Through the de-identification process, it is
difficult to communicate back to the patient
any of the findings and to conduct
longitudinal studies.
Also, there are several uses of de-identified
data that are driving highly commercial use
cases which patients would be less likely to
support especially if it is associated with a
brand or company that has been in the
news for the wrong reasons.

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Creating a Data-Driven Research Ecosystem
This situation often leaves many
healthcare providers with highly
debated questions on how to extract
value from data, commercial models,
user permissioning, and more.

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Serving Life Sciences Through Novel Insights
At Health Catalyst, our focus is to work with
industry on specific projects that will have
an impact on patient outcomes and/or
advance Research and Development of
new therapies where use can be tracked.
Many digital therapeutics companies use
data and digital means to improve patients’
lives, one example is Omada Health.

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Serving Life Sciences Through Novel Insights
As Lucia Savage, their Chief Privacy and
Regulatory Officer pointed out in her
testimony to the US Senate HELP committee
recently, there is a growing consensus that a
clinical fact cannot be purchased and sold,
as it is a biological reality that belongs to the
patient that provided the blood sample.
Companies are creating revenue by
organizing or analysing those facts to
improve outcomes, but this practice raises
the emerging idea that the underlying data
ought not to be purchased and sold.

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Serving Life Sciences Through Novel Insights
Clearly ethical and legal positions differ from
one country and state to another, but I believe
we are moving toward a next-generation
revenue model that will revolve less around the
licensing of the data, and more on how the
data can be used to derive value, as healthcare
is pushed toward value-based models.
Life sciences organizations are increasingly
interested in improving the quality of care to
help improve the system at large.

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Integrated Patient Insights Through Diverse Data Sets
When a pharma company is using data
to understand the patients’ pathway and
outcomes, they need to see the full
richness and diversity, especially the
differences existing across states,
countries, rural and urban environ-
ments and race, ethnicity, age,
gender and socioeconomic status.

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Integrated Patient Insights Through Diverse Data Sets
As we move towards a data-centric world
and utilize more analytics and artificial
intelligence, the richness of the data
used becomes crucial. Health Catalyst
brings together data from more than 100
million patient records.
This also benefits providers as they can
leverage much broader populations for
benchmarking or for research studies.

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Integrated Patient Insights Through Diverse Data Sets
This approach most importantly benefits
patients. As an example, many biotech
companies are developing new curative
gene therapies for rare diseases.
They often struggle to find enough patients
for participation.
With global access to digital health
information, these companies could have a
worldwide reach, in real-time, giving hope to
many that would otherwise die.

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Integrated Patient Insights Through Diverse Data Sets
Similarly, by comparing and learning from
some of the most advanced academic
centres, smaller, less sophisticated health
systems can benefit from improved
diagnosis methods and treatment
pathways for their patients.
Unfortunately, there is wide disparity in
how patients are diagnosed and treated.
Digital technologies could significantly
bridge this divide.

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Integrated Patient Insights Through Diverse Data Sets
As more and more tools are created to
advance our understanding of the disease
and patient experience, Health Catalyst is
striving to translate these tools and
experiences into the world of care delivery
to further define therapeutic value in an
outcomes-focused world.

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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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More about this topic
Link to original article for a more in-depth discussion.
Creating a Data-Driven Research Ecosystem with Patients at the Center
Extended Real-World Data: The Life Science Industry’s Number One Asset
Elia Stupka, PhD, SVP and General Manager, Life Sciences Business
Data-Driven Precision Medicine: A Must-Have for the Next-Generation of Personalized Care
Alyssa Antonopoulos, Precision Medicine, Associate Director; Adem Albayrak, VP of Technology, Life Sciences Business
Sadiqa Mahmood, Medical Affairs, SVP; Elia Stupka, PhD, SVP and General Manager, Life Sciences Business
Healthcare Data: Creating a Learning Healthcare Ecosystem
Elia Stupka, PhD, SVP and General Manager, Life Sciences Business
A New Era of Personalized Medicine: The Power of Analytics and AI
Health Catalyst Editors
Bridging the Data and Trust Gaps: Why Health Catalyst Entered the Life Sciences Market
Dale Sanders, Chief Technology Officer

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Other Clinical Quality Improvement Resources
Click to read additional information at www.healthcatalyst.com
Dr. Elia Stupka is the Senior Vice President and General Manager of the Life Sciences business
unit at Health Catalyst and contributes to the overall vision and growth for the company…
For more of Dr. Stupka’s bio, go here.
Elia Stupka, PhD

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Other Clinical Quality Improvement Resources
Click to read additional information at www.healthcatalyst.com
Health Catalyst is a mission-driven data warehousing, analytics and outcomes-improvement company
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