Empowering rare disease patient advocacy organisations with data

Komodo Health’s president and co-founder, Web Sun, tells us about his company’s new partnership with the Chan Zuckerberg Initiative (CZI) to improve early diagnosis and advance research of rare diseases by providing CZI’s Rare as One Network healthcare data and software.

Though 7,000 rare diseases exist that affect 400 million people globally, a lack of understanding of these diseases can cause a delay in diagnosis and, in turn, treatment.

Rare diseases are challenging to identify, and the relatively small number of patients suffering from these diseases are dispersed across the globe.

The Chan Zuckerberg Initiative, a nonprofit founded by Meta’s Mark Zuckerberg and Dr. Priscilla Chan, has teamed up with Komodo Health to help tackle this challenge.

As of 7 February, CZI’s group of 50 rare disease patient advocacy organisations can utilise Komodo’s high-fidelity data, analytics tools, Healthcare Map, and software to access information on 330 million patients with 15 million new clinical encounters daily and 150 million payer-complete profiles.

“For us, it’s operating at the intersection between data and software. That’s the innovation we’re driving in terms of a full-stack approach,” Sun says.

“We take data through our platform, through API analytics approaches to enterprise software that is powered by the rest of the stack.”

The plentitude of data offered to CZI’s patient advocacy groups will enable them to scale their efforts and accelerate progress in unlocking treatments and cures for rare diseases by giving them a bigger picture of a rare disease patient’s journey.

The benefits of accessibility

Data collection within the healthcare industry has allowed healthcare providers to gain clinical insights that have otherwise been unavailable, helping millions of patients worldwide with common diseases receive more beneficial treatment.

However, for patients with rare diseases, information can be pivotal yet unattainable. Sun says Komodo’s Healthcare Map has been built over the last seven and a half years and contains so much information that can help identify and treat patients with rare diseases.

“It’s our representation of tracking the deidentified, which is important from a privacy and compliance point of view,” Sun says. “It provides the anonymised patient journey of over 330 million patients across every encounter they have with the healthcare system over a period of five, six-plus years.”

The ability for patient organisations to access extensive data about patient cohorts will provide a more accurate view of how patients are diagnosed, which communities may have a greater rare disease prevalence and the symptoms that occurred before, during and after diagnosis, among other benefits. Though this massive amount of data is available, Sun says no one engages with the Map directly. Instead, Komodo’s software is the gateway to the Map’s data.

“Our software is deployed across two dimensions. One is the platform, which is essentially what our internal solution developers capitalise on, and then we externalise that capability to third-party developers.”

Use cases for the Healthcare Map that third parties can take advantage of are multifold and creating software for each solution is nearly impossible for Komodo alone.

Sun says because of this, Komodo engineered solutions or apps that “do certain things for end-users applied against the Healthcare Map.”

External developers can use Komodo’s platform and build analytics modules to explore other use cases using low code or no-code environments. Therefore, organisations can determine how they’d like to use the Map’s data then create a software solution that helps them do so. This technology can be particularly beneficial for rare disease organisations as they often don’t have data scientists at their disposal or full-stack engineers. For example, Komodo has modules in their solutions suite allowing users to view the diagnostic journey of a patient who’s had a confirmatory diagnosis.

“We can take this cohort of patients that we know has this rare condition and figure out what they looked like when they first came into the healthcare system three to five years ago,” Sun states.

The vast amount of data available to CZI’s patient advocacy organisations will help patients and clinicians as it allows for a better understanding of the detection and progression of rare diseases.

The business of data

Helping organisations develop solutions to fight rare diseases is not new to Komodo or CZI. Both organisations made extensive efforts to help battle rare diseases over the past several years. During the pandemic, numerous digital health companies flourished due to the necessity for virtual solutions, including Komodo Health.

In 2021, Komodo acquired two companies: Mavens, a developer of cloud-based software used for speciality biotech and pharma companies, and Breakaway Partners, a market access software company targeting the life sciences industry. Komodo’s Healthcare Map was previously used to help diagnose rare metastatic renal cell carcinoma patients, and Janssen Research & Development uses Komodo’s software for clinical trials for various therapeutic areas, including rare diseases.

CZI has also partnered with large data collection agencies before. Since the Rare as One Project launched in 2019, CZI has announced several partnerships with data companies, including The Human Cell Atlas Data Coordination Platform (HCA DCP), enabling information sharing across researchers and research institutions. CZI was started in 2015 by Meta's Zuckerberg and his wife and former paediatrician Chan. One year later, Zuckerberg and Chan announced they would commit $3 billion over the next decade to try to cure, prevent, or manage all diseases by the end of the century.

Komodo and CZI's portfolios are extensive, and both appear to have the same end goal in mind – decreasing the burden of disease — in this case, the burden of rare disease. Thanks to the extensive use of technology, there's no shortage of data that can be collected, stored, and utilised by companies like Komodo and CZI to ultimately benefit the healthcare industry and patients alike.

The partnership between Komodo and CZI is just one example of how data collection and analysis are valued within the healthcare ecosystem. The trend toward advancing digital innovation in healthcare will only aggrandise data collection companies and, in turn, help patient advocacy groups, such as those under CZI, enhance patient options for care and treatment.

"We are ushering a new era with respect to this full-stack approach, that intersection of the raw data through to the software itself. That's an important nuance that speaks to advancing technology and healthcare," Sun states.

"There’s an opportunity for us to really enable and empower actors across healthcare through software to help patients in a more meaningful way."

About the interviewee

Web Sun is co-founder and president at Komodo Health. He oversees operations, including business development, sales and marketing, and people. He also serves as an executive advisor to Reify Health, Heads Up Health™ and other healthcare/healthtech startups focused on big data, SaaS, healthcare IT (HIT), and predictive analytics to improve patient outcomes.

About the author

Jessica Hagen is a freelance life sciences and health writer and project manager who has worked with VR health companies, fiction/nonfiction authors, nonprofit and for-profit organisations, and government entities.