As we’ve seen, there has been a steadily increasing level of discussion and enthusiasm surrounding precision medicine. The Healthcare Leadership Council (HLC) has remained engaged in this conversation, given the expertise and involvement of its members. HLC hosted a briefing on Capitol Hill last April on the subject, in which Bio-Reference Laboratories, New York-Presbyterian Hospital/Columbia University Medical Center and Mayo Clinic detailed the benefits that have already been realized, and the potential that has yet to be reached. They each shared stories of how targeted therapy transformed the lives of patients in ways that conventional medicine could not. Although the cost of sequencing will continue to benefit and see increased usage from price declines, early genetic testing has allowed for immediate diagnosis and treatment, bypassing the costly trial and error approach. Our member experts all agreed that one organization alone cannot succeed in integrating genome based knowledge into personalized care.
Last year the Precision Medicine Initiative (PMI) was announced by the National Institute of Health (NIH). This year the White House hosted a PMI Summit, in which President Obama both participated and partnered with the NIH in an educational tweet chat that answered questions from the public regarding the initiative. During this chat, NIH Director Francis Collins cited a paradox, “Only by studying populations at scale can you really understand individual differences.” The PMI Cohort Program is currently working towards collecting one million or more participants that reflect the diversity of our country.
Precision medicine is an area that would directly benefit from the ability to collect, store and share data electronically. In order to see real success, harmonization of data privacy laws is a necessary next step. Diverse state privacy regulations regarding patient information accompany HIPAA laws, adding to the complexity of sharing data in a way that would improve the quality of patient care. Federal rules for research subjects intersect with additional privacy policies that are also burdensome to the healthcare system. The ability to utilize any data gathered from partnering facilities is an important function, and dialogue between the federal government and states is needed to ensure this is feasible across the country. This is a field of health policy we have discussed fully in the Healthcare Leadership Council’s recently-released “VIable Options: Six Steps to Transform Healthcare Now” policy recommendations. The U.S. is on the cusp of a new era in healthcare, and the flow of health data is a crucial part of it.