a16z Podcast: Dark Data in Healthcare

Key takeaways

Dark data in healthcare represents a major structural issue that limits patient access and empowerment.
HIPAA is designed to give patients control over their health data, but many are unaware of their rights.
Access to longitudinal health data allows patients to make informed decisions about their care.
The potential for innovation lies in small, patient-aggregated data rather than traditional big data sources.
Harnessing data effectively can help address significant public health issues like the opioid crisis.

Summary

Understanding Dark Data in Healthcare

The episode dives into the concept of 'dark data'—health information that is often inaccessible or underutilized in the healthcare system. The discussion highlights the structural barriers that prevent patients from accessing their own health data. Guests Susannah Fox and Anil Sethi argue that there is a major misalignment between healthcare providers’ control over data and patients’ expectations for access, emphasizing that health records must evolve to serve patients better.

The Role of HIPAA and Patient Empowerment

HIPAA, or the Health Insurance Portability and Accountability Act, was designed to facilitate patient access to their healthcare data, but often it is misinterpreted as a barrier. The hosts advocate that patients should be aware of their rights under HIPAA and leverage them to gain control over their health data. The conversation frames this patient's empowerment as essential for improving healthcare delivery, as patients need to be the center of their care.

Bringing Healthcare Data to Life and Actionable Insights

The discussion moves towards how actionable healthcare insights can be drawn from patient data. With advancements in technology, patients can use tools to gather and share their health records with care providers effectively. The hosts share stories of patients who successfully managed their chronic conditions by having access to their longitudinal health data, emphasizing that informed patients can significantly improve treatment outcomes.

Big Data and the Future of Healthcare Innovation

The conversation culminates with reflections on how small data collected at the patient level can outstrip the current limitations of big data in healthcare. The guests emphasize that the real power lies in aggregating individual patient data to achieve insights on a larger scale. This ‘permissionless innovation’ could lead to unexpected applications and collaborations that improve healthcare for everyone.

Addressing Public Health Crises Through Data

Finally, they discuss how dark data can be instrumental in identifying and tackling public health crises, such as the opioid epidemic. By utilizing aggregated data across the healthcare ecosystem, public health officials can detect patterns of misuse and minimize risks. The argument centers around enhancing data accessibility to better respond to emerging health concerns.

Show notes

with Susannah Fox (@susannahfox), Anil Sethi (@anilsethiusa / @ciitizencorp), Vijay Pande (@vijaypande), and Sonal Chokshi (@smc90)

The problem of "dark data" in healthcare isn't just a feel-good empowerment thing, but a structural issue that leads to miscommunication and extra friction, different players in the entire healthcare system not being able to collaborate with each other, and just major missed opportunities all round. And yes, it also leads to lack of empowerment for patients, not to mention doctors too (who often have less than 30 minutes on site to do their jobs).

But we already know all that. What's not clear is WHY and HOW is this the case, when the very point of HIPAA -- the Health Insurance Portability and Accountability Act (of 1996!) -- is to make data portable, not private. That is, IF patients know to ask for it... and can easily get it. So what if we could have a sort of permissioned "permissionless innovation" for healthcare data, not only bringing all that dark data to light, but more importantly -- borrowing from the history of internet innovation -- letting all sorts of expected and unexpected uses be built on top as a result? What happens when data and entities can talk to each other (à la APIs) through patients at the center of the circle of data?

From the Dr. Google problem (or opportunity!) to clinical trials and even the opioid crisis, we -- Susannah Fox (former CTO of the U.S. Department of Health and Human Services); Anil Sethi (CEO and founder of Ciitizen); and a16z bio general partner Vijay Pande; in conversation with Sonal Chokshi -- explore all this and more in this episode of the a16z Podcast. Let there be light!

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