It’s no secret the global pandemic has upended every industry, but the health care and data communities have arguably faced the most significant challenges. Innovation in health care has been forced to accelerate at a much faster pace. There is obviously a critical need for personal health care data to both understand and combat the pandemic, which has inevitably led to rising concerns around privacy. This comes back to the same question I have posed in my last article: How do we balance our privacy and healthcare needs amid COVID-19?
Countries across the globe are collecting as much personal healthcare data as possible to study the impacts of COVID to prevent not only the spread now, but also the future impacts another global pandemic could have.
Various data projects and hubs across the globe have popped up including one in France where the country’s health organizations are working with Microsoft to collect health data. The hub has come under fire from privacy advocates due to the amount of data the hub is collecting as well as the potential for the data to be transferred to the U.S. The hub’s director stated in this Bloomberg article, “The virus forced us to accelerate things. This crisis shows us why we were created: to have actionable data. But we have to go much further. We need to rethink how we collect health data.”
Contact tracing apps
More widely known are the contact tracing apps which have raised privacy concerns from the beginning. Apple and Google most notably created a contact tracing app that is being used by various countries across the world and the companies are now in discussions with 20 U.S. states to roll out the app.
However, these apps have not gained wide adoption among the general population largely due to many of us feeling uncomfortable surrendering our personal data and privacy. Even other organizations are sounding the alarm over contact tracing apps like the Data Protection Agency which suspended Norway’s contact tracing app warning that it “poses a disproportionate threat to user privacy.”
To combat this threat, Apple and Google have also recently announced they’ve updated the Exposure Notification System (ENS) API which is the framework used for their contact tracing app. This update provides more transparency into how the API is using location data to overcome the struggle of consumer privacy. According to Business Insider, it’s possible that consumers may be more likely to use these Apple and Google-driven contact tracing apps given these updates and more transparency into how they’re being tracked.
But this still brings us back to the question “How do we balance our personal privacy, our PII and PHI, with the societal and medical benefits that arise from sharing our health care data in the fight against COVID?”
Is there a conflict between privacy and technology?
The chief clinical officer of HIMSS posed an interesting thought in this Healthcare IT News article, “Is there an inevitable conflict between science and politics, and between technology and personal privacy? To a degree there is, and to a degree there isn’t because the experiences of 1918 and 2020 show that in all those cases there has been a lot of discussion around the right of privacy, around rights of the person to the rest of the community. There are ways we can get through this and I think we need to debate that much more.”
And he’s right. This is a conversation we need to have now and continue having.
Can we benefit from the power of data while maintaining user privacy?
This struggle between needing data to innovate while also maintaining privacy and proper data governance is the entire foundation of Okera. We realized there was a massive need for companies to balance both innovation and privacy without having to sacrifice one for the other. We’ve been working with large enterprises to tackle this challenge head-on and prove this is a manageable balancing act and not an unsustainable either/or.
In addition to the pharmaceutical company case study, we’ve also worked with large Fortune 500 health care companies (like this one) to unlock the power of their data while also ensuring security, privacy, and regulatory compliance with the evolving data privacy landscape.
The role of the CDO
This balancing act of innovation and data governance is a responsibility that lies largely on the CDO. The role of today’s CDO is not only about placing the right data into the right hands within an enterprise organization; the CDO must now ensure these concerns and complex issues around data privacy and security are addressed as companies grow and evolve.
It’s clear we need to continue having conversations around the use of personal data for medical and societal benefits while maintaining personal privacy. The decisions organizations make around data access and data privacy today are critical to both navigating through the current pandemic as well as how we handle the next global health crisis. And the CDO will play a vital role in driving these conversations and strategic decisions.
[Nick Halsey is the CEO of Okera, which provides secure data access at scale to large enterprise organizations. He has been in the data analytics industry for over 20 years and has worked with many heads of data analytics at Fortune 1000 companies. Before joining Okera, Nick was the president and CEO of Zoomdata. Prior to joining Zoomdata, Nick held leadership roles at Keynote Systems, SugarCRM and Jaspersoft. He contributed to the success of two IPOs and five other exits at various companies and is a limited partner in several VC funds.]