Using mHealth for the Precision Medicine Cohort

Large studies on health and disease typically collect health and lifestyle data on participant volunteers from medical records and extensive phone or paper surveys.  The Precision Medicine Initiative is considering using smart phone and wireless technologies to collect some of this information.   These devices could provide the ability to track health behaviors and environmental exposures much more frequently with minimal burden on participants.  For example, participant volunteers could respond to a few questions multiple times per day via their smart phones about their health status, activities, emotional states, etc.  Location information from their smart phone or wearable device could be used to assess daily activity and also detect exposure to air pollution, etc.  Wearable devices can assess heart rate and other physiological states as well as physical activity levels. Smartphones also could keep participants connected to the study, providing feedback on the data they provide as well as the aggregate data and findings of the study.  The use of these mobile and wireless devices generates a number of considerations:

  1. Willingness of participants to carry their smartphone and wear wireless sensor devices sufficiently throughout the day so researchers can assess their health and activities.
  2. Willingness of participants without smartphones to upgrade to a smartphone at no expense.
  3. How often people would be willing to let researchers collect data through devices without being an inconvenience.
  4. The kind of information participants might like to receive back from researchers, and how often.
  5. Other ways to conveniently collect information from participants apart from smart phones or wearable devices.

We’d like your thoughts on using smart phone and wireless technologies to collect information.

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The Feedback site will accept comments on these topics through July 24. Comments received via the Feedback site may be considered by the NIH as it plans the development of the President’s Precision Medicine Initiative and the vision for building the national participant group, but NIH will not respond to comments.

Research Questions for the Precision Medicine Initiative Cohort

Welcome to the NIH Precision Medicine Initiative (PMI) Feedback blog! The PMI will build a comprehensive scientific knowledge base to put precision medicine into practice on a much larger scale. To achieve this goal, the initiative will build a national research cohort study of 1 million or more Americans to propel our understanding of health and disease. Every few weeks we will feature a new topic and welcome the opportunity to know your thoughts.

This first post focuses on the critical research questions that can be uniquely addressed by the cohort to advance precision medicine. Currently, NIH is considering a number of areas where the research using such a cohort may be particularly helpful, including:

  1. Determining how an individual will respond to a particular drug based on their genes
  2. Discovering new molecular causes for a variety of rare diseases
  3. Identifying new ways to predict disease development using an individual’s genes or other physical characteristics
  4. Identifying new ways to predict disease using information about an individual’s environment or behaviors
  5. Testing new ways to prevent or treat disease using mobile health technologies, such as smartphones or activity trackers

We’d like your thoughts on the most important scientific questions that the cohort can answer.

The comment period is closed.
Read previous comments.

The Feedback site will accept comments on these topics through June 26.  Comments received via the Feedback site may be considered by the NIH as it plans the development of the President’s Precision Medicine Initiative and the vision for building the national participant group, but NIH will not respond to comments.