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CEOs outline four goals to enable ethical and effective data sharing

Sharing and leveraging health information for clinical research and product development in a manner that ensures patient privacy and proper stewardship of data will require leaders to be strategic when expanding access and use with partners.

Tom Sullivan | April 21, 2021

Health care data has a long history of being mired in silos, withheld for proprietary and competitive advantages and largely inaccessible even for the individuals to whom the information pertains. Recent federal government regulations and the broader digital transformation, however, have created an opportunity for leaders to transform how health information is shared and leveraged for the betterment of society 

“We can see a future where patient data will help us unlock new capabilities, whether that’s new diagnostics and therapeutics, the ability to build algorithms that help improve patient outcomes or decision-making to help reduce medical costs,” said Amy Abernethy, MD, Principal Deputy Commissioner and Acting CIO, U.S. Food and Drug Administration. “But if we’re going to do that then algorithms need to be built based on underlying data sets. And importantly, those data sets need to come from somewhere and the most likely sources are going to be health systems and clinical data, sometimes clinical data merged with other data sets.”  

To achieve that future wherein data is shared and put to work more effectively for both clinical research and product development, CEOs and thought leaders will need to spearhead efforts that reduce legal and regulatory risk, accelerate the development of therapies ranging from drug development to new genetic or genomic therapies, ensure compliance and security, address perceptions about information being sold or misused, and structure data-sharing partnerships such that all relevant information is well-governed.  

Four goals to ensure the ethical use of data 
Fellows of the Health Evolution Forum outlined four goals leaders can aspire toward to attain that future:  

1. Expand access to and use of health care data that can accelerate development of therapies, algorithms and medical practices that improve patient outcomes and reduce costs.  

2. Protect patients from privacy and identification risks and other improper uses of data and from poorly developed, unvalidated or biased algorithms.  

3. Ensure that partnerships between data holders and product development and clinical research companies are properly structured, well-governed and provide suitable protections for the data holders and the public, and that they reduce legal and regulatory risk arising from improper use of data or negative perceptions of data use.  

4. Ensure that care improvements generated by health care data are made widely available across populations and reflect the needs of those populations.  

“We want to find ethical ways to move ahead with the widespread use of aggregated health data for clinical research and product development,” said Steve Klasko, MD, President & CEO, Thomas Jefferson University and Jefferson Health. “We want to make sure that we put ethics in at the very beginning, because we know that the fourth industrial revolution — around advanced diagnostics, therapeutics, connected care, advanced payment models  will certainly accelerate how we learn and move closer to health assurance.” 

It is a lot better to have the industry reach self-regulatory consensus than to have this micromanaged by the government. The moment and the opportunity for the industry to reach consensus is now.

Aneesh Chopra, CareJourney

Why private sector CEOs need to take the lead on patient data  
The tension that must be addressed is whether data exists to enable services, outcomes and experiences, or if it exists primarily to be monetized and generate revenue. It is even more important to resolve that in health care than any other industry sector, according to Brian Pieninck, President & CEO, CareFirst Blue Cross Blue Shield.  

“The more we can band together around what should be driving use of data, availability of data, access to data, the better,” Pieninck said. “It is going to be incredibly important for us to maintain a broader base of trust with the public that allows for capabilities to really be utilized in a meaningful way.”  

Aneesh Chopra, President, CareJourney, said that CEOs are already feeling the pressure to advance information sharing.  

“It is a lot better to have the industry reach self-regulatory consensus than to have this micromanaged by the government,” Chopra said. “The moment and the opportunity for the industry to reach consensus is now.”  

While CEOs and other private industry leaders can and should be more nimble than the federal government, regulators can also move quickly if industry missteps, added Steve Udvarhelyi, MD, President & CEO, Blue Cross and Blue Shield of Louisiana. 

So I would think that the stakes are sort of high from that standpoint,” Udvarhelyi said. The same is true for patients trusting health care leaders and organizations with their personal information. “People need to know what is going to happen. They need to trust it.”  

What’s next: Core principles for data sharing  
The above vision and goals were established by the Health Evolution Forum Workgroup on Governance and Use of Patient Data in Health IT Products which, along with the Workgroup on Digital Health and App Experience, is part of the Roundtable on Next Generation IT in Health Care 

Comprised of more than 200 CEOs, the Forum’s mission is to identify best practices already working in the industry, disseminate those broadly and convene payer, provider and life sciences CEOs to commit to deploying them internally and advocating that their peers do as well.  

The above goals will be followed by a set of Core Principles, currently in development, and then ultimately disseminated beyond the Health Evolution Forum Fellows. 

About the Author

Tom Sullivan, EVP & Editor-in-Chief of Digital Content

Tom Sullivan brings more than two decades in editing and journalism experience to Health Evolution. Sullivan most recently served as Editor-in-Chief at HIMSS, leading Healthcare IT News, Health Finance, MobiHealthNews. Prior to HIMSS Media, Sullivan was News Editor of IDG’s InfoWorld, directing a dozen reporters’ coverage for the weekly print publication and daily website. Contact: toms@healthevolution.com or @SullyHIT on Twitter.