Public Health Solutions to Combat COVID-19 in the US
By gwyn schneider and Ash Pembroke
Today, countries all over the world are struggling to respond to the COVID-19 pandemic and many are deploying technology to the front lines (China, Singapore, South Korea, Thailand,). These solutions have the potential to scale, covering large populations quickly, as well as, protecting against unintended exposure and transmission of the virus between individuals. While some of these efforts have been welcomed, others have called into question over issues of privacy and government overreach. At Slalom, we have been both diving deeper into the tech and monitoring the success and failures of their adoption. We are finding, in many ways, patterns are surfacing that mirror challenges faced in digital transformation efforts.
In short, the world is struggling to come to grips with how to balance the public and private value derived from data while managing its exponential growth, use, and abuse.
At their core, data trusts provide a method of alleviating this struggle by facilitating the exchange of highly accurate, relevant, and sensitive data with embedded safeguards and security — building a game-changing ecosystem of trust, accountability, and accessibility. If you haven’t heard the terms data trust or data collaborative before, you are not alone. That is why we have begun this series of articles to go into more detail about what data trusts are and explore how, where, and why we believe they should be leveraged.
As the world watched the COVID-19 epidemic unfold into a global pandemic, the limits of the US healthcare landscape began to appear (see here, here and here). It has become clear that we have some work to do before we’re prepared to address a public health crisis at the national level and confident in our ability to identify and adapt to emerging threats. Regardless of whether a national healthcare system has a robust technology platform or whether it is universal coverage, single-payer, or a two-tiered structure, the rise of a global pandemic has elevated a public health need that crosses every border.
Unfortunately, seismic disruption rarely waits for us to be ready.
Nimble, adaptable, and often scrappy, the tech industry sprang into action spinning up initiatives to respond in both big and small ways. Technologists have a talent for reassembling landscapes to solve previously intractable problems, at times even creating entirely new paradigms in the process.
While there is a long history of attempting to disrupt bits and pieces of healthcare with technology solutions (examples here, here, and here), creation and realization of tools supporting a national public health platform is truly a next level endeavor. With this in mind, we turn to the question of how to approach a solution this far reaching and potentially controversial.
Successful technology responses to COVID-19 have included a national data collection apparatus — we further suggest supporting that effort by leveraging a data trust.
People are more likely to trust an independent data request or application that is transparent about its purpose, functionality, and intent. Engaging with a public health app instead of a company’s proprietary app reinforces its mission and purpose; to provide information to and about public health. While this idea alone may encourage active participation and use, there are some people who might still be uncomfortable with any government entity having access to their sensitive healthcare data. This is where a data trust makes all the difference.
At a high-level, the benefit of a data trust is implementation of accountability and advanced ethical standards, while still maximizing the value of data across public and private initiatives.
In a data trust, users have and maintain full access to and control over their data in a safe and secure third-party structure. While data trusts are relatively new, the concept of a trust is not. Trusts enact a fiduciary responsibility (legal obligation). Essentially, they allow a third-party, or trustee, the power and obligation to act for another (individual or organization) under circumstances which require total trust, good faith, and honesty.
Another requirement satisfied by a data trust relates to researchers need for data completeness, accuracy, and timeliness; which are the three most important attributes of public health data sets. With complete, recently collected, data sets about COVID-19 symptoms, contact interaction, blood antibody test, comorbidities, and positive COVID-19 test results inside the data trust; a comprehensive study of a smaller sample population would provide meaningful insights to drive key decisions. This also allows the individual to “stitch” information together and enhance it with ongoing updates — they would provide credentials to the data trust and leverage editing tools accordingly.
As a bonus, data trusts significantly improve data accuracy and relevance.
Wondering what we’re referring to when we talk about data accuracy? Have you ever looked at your smartphone or a location-enabled app and wondered why it was displaying incorrect location information? What about reviewing your credit report only to find a false claim exists that you need to have removed? These are examples of low accuracy data. In the ever-increasing mountain of information that is collected about each of us individually, there is a fair amount that is missing, incomplete, or just plain wrong. With data trusts, individuals own and have a mechanism to update their data and independent parties can be engaged to double-verify its accuracy.
Data relevance, unlike accuracy, speaks to how necessary the information is to the tasks being performed. Gathering data that lacks relevance undermines the trust ecosystem and can lead to people abandoning the app altogether. Given this paradigm, data trusts encourage requesters to focus on the minimum data required to increase the likelihood that more people will grant their request.
Ultimately, the needs of a public health diagnostic solution — transparency, privacy, data integrity, and recency — are the perfect use case for data trusts.
Hopefully walking through this use case helped illustrate what a data trust is and why you might use one. We’ll be exploring this concept further in a series of articles, with content for theorists, strategists, and technologists alike.
As for a solution to COVID-19, we have been inspired by all of the tech solutions deployed to save lives in this pandemic. We’ve been thinking about how existing, open source, collaborations (like SafePath from MIT) might serve as groundwork to be used for future health emergencies. In addition, a solution like this could potentially set a standard, educating people on its ongoing use, and creating transparent structures for updating data to become an underlying foundation for a national public health platform in the US or an extension of existing national public health platforms globally.
Bottom line, data trusts empower methods of exchanging highly accurate, and at times sensitive data with embedded safeguards, accountability, and security that build a game-changing ecosystem of trust and access.
Who knows, maybe as Singapore makes its app technology open source, the US, in conjunction with other governments, has the opportunity to embark on a concerted effort to develop a public health data trust for analysis related to COVID-19 and other global health threats. This data trust could extend collaboration beyond a single country’s borders forming a deliberate, research grade, data collection effort to gather diagnostics, comorbidities, blood antibody tests, and more to understand immunity to the virus and mutations over time.
The extended platform, which would be accessible (and anonymized) for public research and global use, could be ‘repurposed’ for the next global health initiative. The information in the data trust would gain value over time as the quality of the data shared would exponentially increase as individuals could edit the records and be compensated for participating in future population health studies. Ultimately, a data trust created with global public health in mind, could be a true people-forward initiative, owned by no one person or corporation; a purpose-built solution to tackle the truly global problem pandemics cause.
That said, this vision is intentionally aspirational and would take collaboration by multiple parties to enact. We aren’t the only ones actively collaborating or seeking insight from like minded leaders, this is an opportunity .
If you would like to join this effort, or if you have questions or want to chat about a project that might benefit from a data trust, we encourage you to reach out to us here at Slalom Strategy (strategy@slalom.com). We look forward to the conversation!
