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.”
