This week, the National Institutes of Health (NIH) is moving forward with its Precision Medicine Initiative (PMI), through the launch of its All of Us Research Program. The program aims to collect information on lifestyle, the environment, and biometric data from 1 million Americans. PMI’s goal is to advance understanding of the underlying factors that influence health, and ultimately improve health outcomes.
The NIH announced the initiative more than two years ago. The challenge is going to be gathering this kind of very personal data from individuals from all over the country, and from diverse backgrounds. A study published in Nature last year showed that by 2016, only 20 percent of genome samples are from people of non-European descent.
The NIH intends to engage members of underserved populations to make PMI successful. This is not easy to do, as some in the public may distrust questions from scientists or the government about their race and ethnicity, and health history. To overcome concerns about privacy and security, the program planners are leveraging relationships and building trust in communities around the country. The planners expect to involve members of underserved populations by encouraging them to join a community advisory board and asking them to help design research questions. The All of Us Program says clearly in the protocol that it will not share data with any other government agency.
The team behind PMI wants the initiative to be a two-way conversation. The scientists will collect and analyze the data and make it useful to participants. A protocol called Sync for Science will allow participants to connect with researchers through a patient portal and to authorize the release of their electronic health data. The protocol is in pilot-testing.
The program’s developers are testing the literacy levels of health surveys in different populations across the country. The next steps will be gathering genomics information, mobile and wearable sensor data, and eventually imaging data.
Analysis: The bipartisan 21st Century Cures Act, passed in December 2016, allocates more than $1 billion for PMI. Success of these kinds of efforts will largely hinge on the public’s willingness to participate, and share both their self-reported data as well as biometric data from blood tests and wearables.
A recent report from HIMSS Analytics shows that health care organizations are moving toward adopting precision medicine initiatives. Of the 100 medical organizations and 5,460 hospitals surveyed, nearly 70 percent are making plans to develop precision medicine initiatives in the next two years. They are developing an IT infrastructure and are developing programs to be able to collect samples and perform sequence analysis in house.
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