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Creating a Data-Driven
Research Ecosystem with
Patients at the Center
© 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
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
© 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
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.
© 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
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.
© 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
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.
© 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
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.
© 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
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.
© 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
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.
© 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
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.
© 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
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.
© 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
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.
© 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
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.
© 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
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.
© 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
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.
© 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
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.
© 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
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.
© 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
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.
© 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
For more information:
“This book is a fantastic piece of work”
– Robert Lindeman MD, FAAP, Chief Physician Quality Officer
© 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
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
© 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
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
© 2020 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
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
that helps healthcare organizations of all sizes improve clinical, financial, and operational outcomes
needed to improve population health and accountable care. Our proven enterprise data warehouse
(EDW) and analytics platform helps improve quality, add efficiency and lower costs in support of more
than 65 million patients for organizations ranging from the largest US health system to forward-thinking
physician practices.
Health Catalyst was recently named as the leader in the enterprise healthcare BI market in
improvement by KLAS, and has received numerous best-place-to work awards including Modern
Healthcare in 2013, 2014, and 2015, as well as other recognitions such as “Best Place to work for
Millenials, and a “Best Perks for Women.”

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

  • 1. Creating a Data-Driven Research Ecosystem with Patients at the Center
  • 2. © 2020 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. 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
  • 3. © 2020 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. 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.
  • 4. © 2020 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. 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.
  • 5. © 2020 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. 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.
  • 6. © 2020 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. 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.
  • 7. © 2020 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. 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.
  • 8. © 2020 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. 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.
  • 9. © 2020 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. 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.
  • 10. © 2020 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. 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.
  • 11. © 2020 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. 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.
  • 12. © 2020 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. 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.
  • 13. © 2020 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. 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.
  • 14. © 2020 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. 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.
  • 15. © 2020 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. 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.
  • 16. © 2020 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. 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.
  • 17. © 2020 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. 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.
  • 18. © 2020 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. For more information: “This book is a fantastic piece of work” – Robert Lindeman MD, FAAP, Chief Physician Quality Officer
  • 19. © 2020 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. 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
  • 20. © 2020 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. 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
  • 21. © 2020 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. 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 that helps healthcare organizations of all sizes improve clinical, financial, and operational outcomes needed to improve population health and accountable care. Our proven enterprise data warehouse (EDW) and analytics platform helps improve quality, add efficiency and lower costs in support of more than 65 million patients for organizations ranging from the largest US health system to forward-thinking physician practices. Health Catalyst was recently named as the leader in the enterprise healthcare BI market in improvement by KLAS, and has received numerous best-place-to work awards including Modern Healthcare in 2013, 2014, and 2015, as well as other recognitions such as “Best Place to work for Millenials, and a “Best Perks for Women.”