by Grace K. Kranstover, Public Policy Fellow
Earlier this year, President Obama announced the launch of the Precision Medicine Initiative (PMI) and expressed his desire to “bring us closer to curing diseases, and to give us access to personalized information to keep ourselves and families healthier.” The NIH formed the PMI Working Group tasked with laying out a blueprint to build a one million person research cohort and also identify the policy considerations, challenges, and opportunities. The hope is that the PMI Cohort Program (PMI-CP) will allow researchers to conduct studies that lead to more accurate diagnosis, better disease prevention strategies, personalized treatment and targeted therapies, while simultaneously actively empowering patients. On September 17, the Working Group published its report outlining the PMI-CP. CRD had the opportunity to read over the report that outlined the vast opportunities of precision medicine and issues regarding assembling and engaging over the long-term one million participants, data collection, relevant policies and legislation, and finally the PMI-CP governing structure.
The report stresses the importance of several themes such as participant protection and privacy, engaging participants throughout the cohort process, as well as allowing them to receive information concerning the results of research involving their information. The working group recommended that the cohort make its participant group as diverse as possible not only in terms of racial and ethnic roots, but also of various geographical and socioeconomic backgrounds which can in turn, have an effect on individual’s health.
The possibilities and implications of such a large and diverse study are endless and the PMI working group has successfully outlined the first steps to initiate a viable and useful PMI-CP. The report addresses issues related to the uniqueness of organizing such a large cohort and represents an important next step to making the PMI-CP a reality. The NIH named Dr. Josephine Briggs as acting director to begin the process of implementing this ambitious project, though a national search for a permanent director will begin soon. Stakeholders have expressed support for a cohort that can provide researchers and medical experts with a wealth of information to better inform diagnosis and treatment plans, prevent disease, and develop innovative treatments. Perhaps even more importantly, the PMI-CP and the Working Group’s plan will foster a new dynamic partnership between participants and researchers by calling for the return of results, ongoing engagement, and the self-collection and reporting of data.
The report can be found at http://www.nih.gov/news/health/sep2015/od-17.htm along with other informative information. For a more comprehensive summary of what is included in the report, please contact CRD Associates.