While consumers are generally willing to forego privacy in exchange for convenience in their daily lives, there may be one vital exception: health data. The status of one’s health has culturally been deemed highly personal, and one that is not shared with others outside of a circle of close loved ones and medical professionals.
The Health Insurance Portability and Accountability Act (HIPAA) was established in 1996 in the USA as a standardized way to protect health information from fraud and threat, but this protective regulation is dated when it comes to the digital world we live in today.
With major privacy scandals such as Facebook, Google and most recently Garmin, consumers may be more wary about knowingly sharing their data. Apart from fear of being misused by third parties, there is mistrust that it may not be used in the way that is promised by the organizations collecting it.
"The lack of global rules regarding privacy in general, and lack of a single body that regulates digital health specifically, makes it even harder for data health sharing across organizations to become truly universal."
One example is the recent 23andMe partnership with pharmaceutical GlaxoSmithKline. 23andMe is a popular at-home genetic testing kit which is used recreationally by millions of Americans to trace their heritage and sometimes learn about particular health conditions that may impact them. They recently went under fire for allowing pharmaceutical GlaxoSmithKline access to their data. This sharing of data not only affects the person who explicitly gave their DNA - perhaps without knowing the full consequences - but their extended family who may have not have agreed to it at all. While the legalities consumers sign detail it in the small print, this surfaces a major debate about privacy, data’s role in healthcare and scientific advancement, monetization of that data, and data health sharing.
Another major obstacle facing the global adoption of data health sharing is local regulations such as Europe’s General Data Protection Regulation and California’s Consumer Privacy Act. The lack of global rules regarding privacy in general, and lack of a single body that regulates digital health specifically, makes it even harder for data health sharing across organizations to become truly universal.
The health sector as a whole finds itself in a Goldilocks Dilemma, having to balance the delicate act of appeasing consumer concerns regarding privacy, and wanting to to utilize their data for the development of better, safer, healthcare that has the potential to reach a much wider range of patients.
The benefits of liberating this data outweigh the risks and implications of doing so. From healthcare delivery, to response, prevention, and treatment - the advantages are plentiful and not just in the world of healthcare but across multiple industries.
Given the immense pool of information available, a universal health data sharing platform would allow for the faster development of research. For example, as the world is battling with the COVID-19 pandemic, there are many data points that are not being maximized. These points could potentially lead to a more uniform and effective mode of treatment and perhaps even of stopping the spread almost entirely. Furthermore, the ability to share data in real-time also allows for actions to be taken in real-time, rapidly accelerating the treatment and decision-making process.
Healthcare institutions are one of the only places nowadays still requesting faxed-in forms, hand delivered original documents, and an overall cumbersome bureaucracy barring access to care. Universal digital health records would streamline the entire process of seeing a doctor, seeking a second opinion, getting a prescription filled or even visiting an emergency room. The data regarding previous injuries, allergies or conditions would be known before having to fill out questionnaires. As patients, having access to their own data and being able to share it with different medical facilities and professionals could avoid conflict and confusion regarding past medical history, resulting in an all-around more streamlined care process.
As for insurance companies, the aggregated data would allow for more personalized insurance policies that lead to reduced (or increased) premiums depending on the person and their overall health and wellbeing. In an effort to reduce premiums, insurance companies are constantly on the lookout for alternative data in the health sector to better serve their clients.
The many obstacles blocking the path to life-saving and life-enhancing data sharing can be solved in two ways: by securely anonymizing this data or by creating a secure digital identity system where each citizen owns their own data. Sweden, Norway, Finland and Denmark are countries that successfully implemented the latter.
As for anonymizing data; there are a range of already tackling this problem. Companies such as doc.ai that empower patients by allowing them access to their own data, and the ability to share it with whom they see fit. Other companies such as Lynx.MD enable the sharing and analysis of safe-guarded unstructured data which retain a patient’s privacy at scale.
As the myriad effects of the COVID-19 pandemic become more apparent through the acceleration of the adoption of digital health, we will be seeing a greater push towards data-health sharing, unique innovations that will enable it, and ultimately, a healthier world.