The health data transparency movement is birthing a new generation of startups

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In the early 2000s, Jeff Bezos gave a seminal TED Talk titled “The Electricity Metaphor for the Web’s Future.” In it, he argued that the internet will enable innovation on the same scale that electricity did.

We are at a similar inflection point in healthcare, with the recent movement toward data transparency birthing a new generation of innovation and startups.

Those who follow the space closely may have noticed that there are twin struggles taking place: a push for more transparency on provider and payer data, including anonymous patient data, and another for strict privacy protection for personal patient data. What’s the main difference?

Anonymized data is much more freely available, while personal data is being locked even tighter (as it should be) due to regulations like GDPR, CCPA and their equivalents around the world.

The former trend is enabling a host of new vendors and services that will ultimately make healthcare better and more transparent for all of us.

These new companies could not have existed five years ago. The Affordable Care Act was the first step toward making anonymized data more available. It required healthcare institutions (such as hospitals and healthcare systems) to publish data on costs and outcomes. This included the release of detailed data on providers.

Later legislation required biotech and pharma companies to disclose monies paid to research partners. And every physician in the U.S. is now required to be in the National Practitioner Identifier (NPI), a comprehensive public database of providers.

All of this allowed the creation of new types of companies that give both patients and providers more control over their data. Here are some key examples of how.

Allowing patients to access all their own health data in one place

This is a key capability of patients’ newly found access to health data. Think of how often, as a patient, providers aren’t aware of treatment or a test you’ve had elsewhere. Often you end up repeating a test because a provider doesn’t have a record of a test conducted elsewhere.

Now multiply that by 10 for a person with a rare disease who’s seeing many specialists. Having all your own health data in one place, accessible to you, provides enormous benefits.

Startups in this space include:

• PicnicHealth, which enables patients to have all their records in one place. This wasn’t possible until legislation passed in Obamacare that required hospitals to create electronic records for their patients. Previously, all these records would sit on paper in folders in each siloed doctor’s office. This is a monumental shift that gives patients ownership of their data and breaks down those silos.
• AllStripes, which is designed to help patients with rare diseases keep all their records in one place. Its approach is very similar to PicnicHealth but focused on the underserved rare-disease community.
• Apple’s Health app, which is making swift progress toward being a standard platform for one’s own health data.

Real-world evidence and real-world data companies

There is a relatively new space called real-world evidence (RWE) or real-world data (RWD) that helps life sciences companies and the Food and Drug Administration monitor drug safety and adverse events once drugs are in the market. This data is helpful in several areas:

• Future regulatory decisions, in the case of the FDA.
• Identifying and recruiting patients for clinical trials (50% of trials fail because they can’t recruit patients).
• Supporting clinical trial designs and observational studies (for instance, if a drug developer spots a trend around successful off-label use of a product and decides to seek formal FDA approval).
• To develop coverage decisions and guidelines for drugs for clinicians. One exciting area to watch here is whether the FDA will ultimately allow drug developers with enough RWD on performance to skip or accelerate clinical trials, thus helping to get treatments already proven to be effective in the real world out to market faster. Startups playing in the RWE/RWD space include:
  • Clarify, an analytics platform for life sciences companies that is used to track patient cohorts, understand cost of care and track how patients travel through the U.S. health system.
  • CareJourney, which is helping payers reduce the total cost of care by analyzing RWD. It was started by Barack Obama’s former chief technology officer, who spent a lot of time working on healthcare. CareJourney is helping health systems in the U.S. rethink how they charge patients for care.
  • Aetion, which is helping life sciences companies use RWD in clinical trials and commercial activities. Aetion helps clients get drugs to market more quickly by using information about what is happening with patients and a pharma company’s drug in the real world.

The now-blockbuster drug Keytruda, from Merck, provides lessons in RWE. A drug that languished inside Merck after having been tumbled through several acquisitions was rapidly revived in 2010 when a similar drug from a competitor showed promise in a trial.

Merck used RWE from its own trial to quickly zero in on advanced melanoma as the best opportunity for rapid FDA approval via the agency’s Breakthrough Therapy program. This helped Merck fast-track approval and beat its competitor to market. The company later added lung cancers to its label use.

Accelerating the move to value-based care

Here in the U.S., while we spend two to three times what other developed countries spend on healthcare, our outcomes are generally worse. Value-based care (VBC) is a healthcare model that’s focused on keeping people healthy, rather than just providing treatment when they are sick.

It’s heavily focused on preventive care, and multiple studies have shown that over time, it reduces overall healthcare costs significantly while vastly improving outcomes. Often, providers have skin in the game, making more money when outcomes exceed certain thresholds, but accepting lower payments when they do not.

Companies helping to accelerate the move to VBC include:

• Innovaccer, which helps assess risk for value-based contracts.
• Arcadia, which helps healthcare organizations achieve financial success in value-based care.
• Abacus Insights, which is focused on breaking down industry data silos, enabling consumers to make better health choices and physicians to make more informed treatment decisions.
• SymphonyCare, which facilitates value-based care via integrated applications for providers, payers and patients.

Enabling precision medicine

Precision medicine is the practice of evaluating a patient’s health status and specific disease to determine the treatment that will be most effective for their specific circumstance. You can see why healthcare data transparency would be so critical here, both for capturing the complete picture of a particular patient’s health status, but also to see what treatments worked for patients with similar profiles.

• Insitro is one well-known startup in this space. The company uses the latest in machine learning to help pharmaceutical and biotech companies bring more viable drugs to market.
• Another is Notable Labs, which is focused on precision oncology.
• Nference is using AI and machine learning to power drug discovery using healthcare data.

These companies could not have existed or survived five years ago. Not only was the data not available, but the computing power didn’t exist. Not until the advent of cloud computing was it feasible to quickly analyze such large data sets at a reasonable cost. Just a few years old, these startups are already worth collectively billions of dollars and have created thousands of jobs.

In addition to new market entrants, there are also a number of old dogs — such as IBM, IQVIA and Veeva — with new tricks thanks to the flood of healthcare data currently available. IBM, for instance, recently launched a new blockchain healthcare offering. Other incumbents in the healthcare space include Optum and Mede Analytics.

This sector is still somewhat nascent — we are in the first wave of innovation, with much more to come. Yet the total value of the startups above already adds up to billions. As data becomes more available, and cloud computing less expensive and more powerful, technology will continue to evolve, and this space will represent more and more of the market cap of the overall tech space.

A 1917 Sears ad for electric-powered appliances advised customers to, “Use your electricity for more than light.” Similarly, healthcare stakeholders — including patients, providers and payers — are now reminded to use healthcare data for more than just charting.

The insights provided by this data — now more freely available than ever — are already bringing a host of new conveniences to all of our lives.