In mid-October, the National Institutes of Health announced that its Precision Medicine Initiative (PMI) Cohort Program has expanded to include four additional regional medical center groups – the California Precision Medicine Consortium, Geisinger Health System, the New England Precision Medicine Consortium, and the Trans-American Consortium for the Health Care Systems Research Network.
These groups, which collectively consist of nearly 20 distinct institutions, will work in concert with the other existing healthcare provider organizations (HPOs) taking part in the PMI to recruit the one million participants necessary to complete the PMI cohort. More than ever, medical philanthropy – the willingness of patients to give of themselves for the advancement of healthcare research – will be critical to achieving this as well as other precision medicine endeavors.
The goal of precision medicine is to take individual variability in genes, environment, and lifestyle into account to effectively prevent, diagnose, and treat disease. To do this, we must understand very detailed subsets of our population, across the numerous variables that make each person unique – variables that include genetic makeup, medical history, demographics, socio-economic standing, psychological history, and many other elements. But perhaps more important is the need to have a willing population – a diverse group of people ready to take part in changing medicine, giving literally of themselves by donating the specimens and data required for studying new ways of addressing diseases.
Fortunately, research reveals that patients are willing to participate. The NIH conducted a survey and shared the results in August 2016, showing that 79 percent of respondents were in support of the PMI Cohort Program, with 54 percent responding that they would “definitely or probably participate if asked.” Quite encouraging was the finding that individuals from various under-researched populations were willing to take part. We at iSpecimen conducted our own survey late last year, through an independent third-party research firm, asking a representative sample of American adults about their attitudes toward specimen donation for research. We found that 83 percent were willing to allow the use of their de-identified clinical specimens for research, upon completion of clinical testing, and that nearly two-thirds of respondents were open to donating an additional tube of blood specifically and exclusively for research purposes. Given these collective findings – that patients are indeed willing to contribute and help – it seems clear that we are standing on the brink of an era of unprecedented transformation of clinical care.
Enrollment of the PMI cohort begins in earnest at the end of this year or early next. It is the largest precision medicine research effort ever undertaken, in both scale (number of participants) and scope (diversity of participants). As we move ahead in scientific discovery, we will increasingly depend on patients as active participants in the quest to advance healthcare. Just as healthcare services are increasingly focusing on the specific needs of the individual, so too will research efforts going forward.
The contributions of philanthropic patients will directly impact our results. These patients – inherently ready to give of their time, their samples, and their data – will be crucial to achieving the full potential of precision medicine. It is extremely promising that as the PMI takes off, we see strong patient support, which ultimately, will accelerate progress.
