Washington, D.C.—Eric Dishman was diagnosed with a rare type of kidney cancer and went through rounds and rounds of treatments over the course of more than 20 years before his genomes, and the genes of his cancer, were mapped in an effort to personalize his treatment.
After the gene maps were complete, Dishman’s physicians learned that he’d been undergoing treatments that were unlikely to have benefited him, he told the audience at the Personalized Medicine Coalition’s annual State of Personalized Medicine luncheon on Tuesday.
Finally, shortly after that analysis pointed him to toward a clinical trial and a kidney transplant, he was declared cancer free.
After experiencing the benefits of precision medicine firsthand, Dishman is now the director of the National Institute of Health’s Precision Medicine Initiative Cohort Program, renamed the "All of Us Research Program" late last year.
“I am one of these weird early prototypes of precision medicine,” Dishman said in his keynote address. He said he told his wife after the transplant that he had to figure out how to make what he had access to available to everybody.
The goal of the program, Dishman said, is to scale precision medicine from pockets of patients to much larger groups and, eventually, the entire U.S. population.
All of Us is in the process of designing digital tools to engage with potential participants. It’s currently engaged with more than 60 partners, mostly provider groups, to find people to join the cohort. But once its mobile app, website and phone line are up, All of Us will also connect directly with volunteers.
Early testing is likely to begin by the end of the month, Dishman said, and they’re planning to include up to 35,000 people in early efforts. In September, the All of Us team will “pause and evaluate” the testing phase, with the intent to launch nationwide in October.
As many as 1 million patients will be tracked over 10 years and data on their health will be collected into a large, nationwide cohort. Having a larger patient data bank can encourage new research and allow for a greater push for personalized precision medicine initiatives.
Scaling precision medicine poses a number of challenges, he said, based on how the healthcare industry functions. So the industry should take a cue from other businesses and draw up “ecosystem maps” that can allow for better future planning and for stakeholders to examine how cultural, economic and industry factors interact and could impact these initiatives.
Dishman, a former leader at Intel, said that company did something similar when drawing up long-term plans. The maps were never perfectly spot-on, he said, but they provided a vital starting point.
“It’s important when you do this ecosystem thinking to possibility think about what this ecosystem looks like,” he said.
In addition to embracing mapping and forward thinking, Dishman said that future precision medicine initiatives, including All of Us, should address five concerns:
- There must be a new approach to research, and that includes an expanded pool of researchers. Study teams must avoid “over-hypothesizing” as they examine data
- The industry should embrace new business models. Of concern, he said, is that stakeholders across the healthcare industry, including providers, payers and the pharmaceutical industry, are afraid to commit to a business model on paper. Also, all of these groups are consolidating in an attempt to integrate more elements, so they’re competing in the same type of model, he said
- The push for value-based care and increased data sharing should continue. In addition in the policy sphere, precision medicine initiatives will be forced to confront privacy laws
- New workflows and workforces should be explored. When groups set out on new initiatives, they often think of the workforce they currently have and base it around that, instead of potentially building the workforce they need, he said
- Take stock of the “social covenant” in healthcare. This may force patients to take more ownership of their care, he said. Providers will have to establish a clear definition of care coordination, too