In 2016, the Precision Medicine Initiative (PMI) was launched to develop a new model of patient-centered and patient-driven research to accelerate biomedical discoveries and provide clinicians with new tools, knowledge, and therapies to select which treatments will work best for individual patients. The ongoing goal of precision medicine, as defined by PMI, aims to improve our understanding of what causes disease, disease progression, treatment response, and other health outcomes through the precise measurement of molecular, environmental, and behavioral factors. The current NIH-wide All of Us Research Program will address this effort by gathering health-related data, through surveys, electronic health records, physical measurements, biospecimens and, eventually, wearable technologies, from one million or more people nationwide who reflect the diversity of the United States. By taking into account individual differences in lifestyle, environment, and biology, researchers will uncover paths toward delivering precision health.
The goal of All of Us is to set the foundation for a new way of doing research that fosters open, responsible data sharing with the highest regard to participant privacy, and that puts engaged participants at the center of research efforts. For a number of reasons, including increased adoption of electronic health records, decreased costs associated with genomic analysis, more sophisticated data science techniques, and greater use of mobile health technologies, the time is right to embark on this monumental approach to improving the health of individuals.
Nursing research is aligned with many of the Initiative’s long-term goals that will stimulate research using the All of Us data, such as:
- Developing ways to measure disease risk based on environmental exposures, genetic factors, and gene-environment interactions
- Identifying new targets for treatment and prevention
- Testing whether mobile devices can encourage healthy behaviors
- Laying the scientific foundation for precision health for many conditions
- Empowering study participants with data and information to improve their own health
Enrollment in All of Us has begun at more than 100 clinics across the country. As the Program ramps up for nationwide recruitment this spring1, fourteen national community groups and health care provider organizations, including the American Association of Colleges of Nursing (AACN), are partnering with All of Us to raise awareness about the Program and educate their members about the benefits of participation in it. These partners will facilitate the meeting of potential participants in their respective communities, to expand the Program’s demographic and geographic reach and ensure that All of Us includes a diverse cohort of people.
All of Us is designed to be a broad public resource to accelerate precision health. Presently, All of Us is requesting input to help the Program determine the most critical types of data to collect, as well as collection methods, in order to build a research platform capable of supporting thousands of studies across NIH's research areas. The community can submit ideas through a tool known as a “use case” that outlines and describes research questions that the All of Us Research Program could help answer. The information the community provides will be used at the All of Us Research Priorities Workshop on March 21–23, 2018, to identify key research priorities and requirements (such as data types and methods) for future versions of the All of Us protocol.
I encourage you and your associates to take advantage of this opportunity. Please visit the All of Us webpage that has a link to IdeaScale, where you can see the ideas submitted by others and add your own by February 23, 2018.
Patricia A. Grady, PhD, RN, FAAN
National Institute of Nursing Research
National Institutes of Health