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

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.

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

  1. 1. Creating a Data-Driven Research Ecosystem with Patients at the Center
  2. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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.”

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