Cancer Moonshot launches new interoperability efforts

The White House has announced that the next phase of its ongoing Cancer Moonshot will focus on enhancing interoperability, health information exchange (HIE), and other data-driven strategies for enhancing access to key cancer data used for innovation and research. 

Since 2016, the White House has spearheaded a long list of cross-industry efforts to expand access to high-quality, equitable cancer care, including developing technical infrastructure to support advanced oncology research. The Cancer Moonshot started soon after then-Vice President Joe Biden’s son, Beau, died of brain cancer and has continued to be a top priority during Biden’s presidency. 

The latest announcements center on the Advanced Research Projects Agency for Health (ARPA-H), which was created in 2022 as part of the National Institutes of Health (NIH). 

In addition to awarding more than $240 million this year for research into preventing, detecting, and treating cancer, ARPA-H will oversee the development of a new “biomedical data fabric toolbox” and the new ARPANET-H network, which will bring cancer-focused data exchange to all 50 states. 

Finding commonalities across disparate data sets

ARPA-H will begin by partnering with the National Institutes of Health, the National Cancer Institute (NCI), and other agencies to tackle the challenge of extracting meaningful, research-ready insights from the wide variety of sources that currently comprise “cancer data.”    

“Today, cancer research data is collected across thousands of research labs, clinical care organizations, and numerous other sources; these entities all store their datasets differently, making it difficult for cancer researchers to leverage the full potential of massive amounts of data that exist,” the press release states.   

Instead of trying to fundamentally change how these data sources are created or compel all stakeholders to adopt a narrow set of standards, ARPA-H will instead focus on tools that can sit on top of the current environment and accurately mine and aggregate key elements for future use.  

“This initiative will pioneer prototype technologies capable of seamlessly searching cancer datasets to reveal opportunities for groundbreaking disease detection, prevention, and treatment, reduce the time needed to integrate new data sources from months to days, and improve data usability by the research community—so we can break down existing data siloes and learn from the experiences of more patients,” the release explained. 

Expanding HIE to support health equity

ARPA-H will also launch ARPANET-H, a new HIE network designed to create a “continuous feedback loop” with patients, providers, researchers, and other entities in the clinical and life sciences communities.  

Health equity is a major focus of this initiative, as the HIE network is envisioned to help historically underserved populations access more opportunities to participate in clinical trials and access the latest therapies.   

“ARPANET-H will comprise Customer Experience, Investor Catalyst, and Stakeholder and Operations hubs, along with a network of supporting spokes that connect local organizations, health providers, companies, and others to ARPA-H’s work,” the agency said. “This new network will enable historically underserved populations to actively participate in clinical trials, improve equity in access to innovative cancer interventions and accelerate the agency’s work to drive breakthroughs in preventing, detecting, and treating cancer and other diseases.” 

Rallying industry behind a common cause

The Cancer Moonshot has thus far been successful at galvanizing industry stakeholders to collaborate around research, devise shared interoperability solutions, and improve experiences and outcomes for patients.  

In addition to the announcement of new government initiatives, the White House shared information on several complementary projects from patient advocacy groups, technology companies, and professional societies. Highlights include: 

• The American Cancer Society (ACS) will create a new oncology professional navigator curricula and certification program to expand the number of oncology navigators available to patients. These navigators will receive training on how to support people with cancer through their journey in a timely, culturally competent, and compassionate manner. 
• Komodo Health, a health data and technology startup, is announcing a new platform to measure cancer disease burden, map cancer outcomes, and illuminate disparities in cancer care. Over the next two years, the company will work with public health officials, government agencies, and patient advocacy groups to close screening gaps and improve access to preventive care. 
• The Leukemia & Lymphoma Society (LLS) will invest more than $17 million to bring clinical trials and treatment innovation to diverse and underrepresented communities across the country. The investments will include expansion of the Influential Medicine Providing Access to Clinical Trials (IMPACT) Research Grant Program to bring blood cancer research opportunities into geographically diverse communities. 
• TOUCH, the Black Breast Cancer Alliance, will bolster Black women’s breast cancer clinical trial participation by 2025 committing to reaching 350,000 Black women and motivating 25,000 into trial portals. In addition, TOUCH will work with Genetech, a member of the Roche Group, provide nurse navigator services through TOUCH Care to assist Black breast cancer patients in clinical trials and will add five trials annually. 
• The National Brain Tumor Society (NBTS) is launching a comprehensive effort to advance quality of life (QoL) research for people facing brain tumors. The society will work with patients, clinicians, researchers, and industry to support future QoL research starting in early 2024. 

Jennifer Bresnick is a journalist and freelance content creator with a decade of experience in the health IT industry.  Her work has focused on leveraging innovative technology tools to create value, improve health equity, and achieve the promises of the learning health system.  She can be reached at jennifer@inklesscreative.com.