Among the most intriguing announcements at the recent AAN meeting in Los Angeles [see conference report, p7] was a discussion of a new precision medicine initiative by Francis Collins, director of the National Institutes of Health. Speaking by video from Washington, D.C., Collins described a bold new effort, called the All of Us research program, to get 1 million Americans to participate in a study of the relationship between genomic and environmental factors contributing to diseases. Patients will participate in a variety of ways, including sharing their electronic health records, donning wearable sensors, providing blood samples, and responding to questionnaires collected by phone or internet.
The NIH has already enrolled 30,000 people in a beta test of the initiative, and Collins said the NIH will announce a nationwide launch in coming weeks with funding from Congress. He plans to use two parallel pathways to reach the 1 million-participant goal: a direct pathway targeted at individual patients, and a provider pathway targeted at insurance companies. Although the ask is not insignificant, since participants will be yielding a considerable amount of personal health information, the reward is tantalizing. The NIH will supply patients with significant personalized medicine recommendations that are likely to dramatically improve their own healthcare outlook.
Collins told the AAN audience that this initiative will have particular benefits for the neurology and psychiatry communities. He pointed out that migraine affects 15 percent of the population, chronic pain 11 percent, Parkinson’s disease 2 percent, epilepsy 0.6 percent, and stroke 0.3 percent. This means that the initiative will collect meaningful and statistically significant data from hundreds of thousands of individuals with neurological disorders. With data gathered from wearable devices, smart phones, and numerous other sources, investigators will be able to piece together a treasure trove of information on what migraine therapies work best, for example, or which factors most affect recovery from stroke.
Though the NIH will face considerable hurdles in reaching the 1 million-participant goal—not least of which is concern for privacy—we are encouraged by the potential benefits and laud the director for his enthusiasm and efforts promoting the idea. Aside from the valuable clinical data that All of Us will offer to neurologists, psychiatrists, physiatrists, and other professions, the initiative meshes well with ideas we have proposed in this space to speed commercialization of neurotech therapies. In particular, the ability to evaluate neurotech therapies vis a vis pharmaceutical interventions—as opposed to ridiculous “sham” controls—looms large if this initiative succeeds. And ultimately, it may obviate, or at least lessen, the need for multiple clinical trials for new neurotech therapies before a device can be approved.
Editor and Publisher