Boosting Value From Genomic Database Participation

Unified patient network launched to drive precision medicine research

By Megan Headley

Precision medicine promises a tailored approach to individual patients’ care plans that aims to prevent and treat disease through the use of genomic data. Through precision medicine, medical solutions can be as unique as a person’s genetic makeup, or the genetic profile of a patient’s tumor.

To boost the promise of more effective therapies, a number of organizations are working to capture the patient data that will drive research around precision medicine, with the National Institutes of Health’s All of Us research program being a notable example. Now, Seven Bridges Genomics, a bioinformatics ecosystem provider, has announced the formation of the Unified Patient Network (UPN). This subsidiary was launched in December 2021 with the goal of facilitating clinical research and collaboration between patients, member health systems, and biopharma companies. In addition to advancing precision medicine, UPN aims to improve patient care through a collaborative approach to genomic sequencing, with an ambitious target of 5 million patient volunteers in five years.

“For every patient who participates, UPN will pay for the process, from sample collection through sequencing,” says William Moss, CEO of Seven Bridges and the UPN. Sequencing data secured from patient volunteers will be optimized for clinical sequencing and research purposes through anonymization. Moss explains that the goal is to return value to the patient, to providers, and to the biopharma companies that will fully fund these programs.

Removing biopharma and healthcare friction

UPN aims to stand apart from other databases by creating a community for participation while ensuring each party receives a strong return on their investment.

As Moss explains, the concept behind the network stemmed from requests from biopharma companies, who seek large patient cohorts to drive targeted pharmaceutical research. While Moss says health systems would be an obvious ideal partner in accessing this information, the tension between these groups presented a challenge.

“In today’s society and overall business environment, there’s so much friction between biopharma and health systems and patients that the relationships that result are unbalanced,” Moss says. “Some of that friction comes from anti-kickback legislation, some of it comes from societal scrutiny, some of that friction comes from an imbalance in bargaining power.”

Through UPN, Moss says, “we believe that we can create an ecosystem that can resolve these frictions.”

The return on investment

For the biopharmaceutical companies, UPN provides a clear gain in access to the cohorts they need. “With the ability to extend invitations to participate to patients across multiple health systems, UPN will be able to provide biopharma researchers unprecedented access to highly harmonized, de-identified, whole-genome and longitudinal EHR data regarding highly specific cohorts drawn from thousands of research participants,” Moss says.

The data can be used as part of institutional review board–approved research studies to understand how genes contribute to or protect against various diseases, and influence how well patients may respond to treatment. “In some cases, genomic sequencing may reveal genetic alterations that could change the course of a patient’s treatment,” Moss adds.

Genomic sequencing is one way that UPN aims to ensure that patients receive value through their voluntary participation in these programs. It begins with volunteer patients undergoing a genetic screening. “If they one day are diagnosed with a disease or condition that is not responsive to other therapy, they’re already on the map to secure access to precision medicine,” Moss says.

UPN also aims to increase value to member health systems and their provider teams. Washington University School of Medicine in St. Louis and its affiliated health system, BJC HealthCare, are the first academic health systems to join UPN as founding members, with two additional founding members in the process of completing their affiliation. At the health system level, members gain access to a de-identified patient database for use in internal research and collaboration.

Physicians within these health systems will receive peer-to-peer counseling that guides them on strategies for integrating genomic data and precision medicine into patient care plans. While biopharmaceutical firms participating in the program receive anonymized data, member health systems receive a fully identified record with whole-genome content for each patient. This content can be harmonized into the patient record for clinical use.

In addition, biopharma companies have the option of using their anonymized data to select patients whom they think would benefit from participating in current research programs. For each data request from a biopharma company, UPN forwards the request to the health system that provided the data. The health system can re-identify the patient and, through the provider, present this research to the patient as a potential part of their care plan, driving value for the health system and patient.

Increasing equity 

Unlike the publicly funded NIH database, the UPN is funded by participating biopharma companies. Within the first year to 18 months, Moss acknowledges, UPN projects will largely be biopharma-directed to ensure revenue flow. By year two, UPN aims to strike a stronger balance between projects driven by biopharmaceutical needs and as health system priorities.

Moreover, Moss says the UPN is working to provide internal grants in the future that will help health systems bring in certain underserved populations and provide care for individuals whose data demonstrates positive findings. “These grants will be built up to be used to actually fund care for those patients,” Moss says. “It’s significantly expanding access to care for precision medicine and advancing precision medicine in a massive way.”

Megan Headley is a freelance writer and owner of ClearStory Publications. She can be reached at