Majority of Americans would contribute data to PMI cohort
NIH survey shows high rates of willingness to share personal health data, including info from EHRs.
A new survey shows broad support for a national precision medicine study to engage 1 million or more American volunteers who will contribute a range of data about themselves via electronic health records and mobile or wearable devices.
According to the National Institutes of Health, 79 percent of survey respondents expressed support for NIH’s Precision Medicine Initiative (PMI) Cohort Program, a landmark longitudinal study designed to map the genomes of 1 million U.S. participants and make the data available to researchers with the hope it will lead to medical breakthroughs.
In addition, 54 percent indicated that they would definitely or probably participate if asked. NIH reported that this level of support for participating in the study was “fairly constant across racial and ethnic groups as well as other demographic categories.”
The survey results, compiled by a team of NIH researchers who analyzed responses of 2,601 people selected randomly from a representative sample of the U.S. population, were published August 17 in the journal PLoS ONE.
“These survey results suggest that people from all walks of life will be interested in the cohort program,” said Dave Kaufman, lead author and a program director at NIH’s National Human Genome Research Institute.
“But it may take some more thought and effort to engage older people and those with fewer years of education,” he cautioned. “These results were helpful in identifying areas where the PMI Cohort Program may want to focus outreach efforts, beyond the communities that have been historically underrepresented in research.”
Among the other findings of the survey:
• Respondents expressed high rates of willingness to share many types of personal data, such as blood samples (73 percent), genetic information (76 percent), a family medical history (77 percent), soil and water samples from their home (83 percent) and data on their lifestyle, diet and exercise (84 percent). By contrast, of those with social media accounts, only 43 percent said they would share social media information.
• In considering the value of various incentives for participation, 90 percent of respondents said they believe it is important to receive information about their health. When asked what types of information they would like, 75 percent want lab results (such as cholesterol and blood sugar levels), 75 percent want genetic information, 68 percent want a copy of their medical records and 60 percent want information about other research studies relevant to their health.
• Some 76 percent of respondents agreed that “research participants and researchers should be equal partners in the study.” In particular, respondents felt that it was important for participants to help decide what kinds of research are appropriate, what to do with study results and what research questions to answer.
The goal of the PMI Cohort Program is to enroll 79,000 volunteers directly or through recruiting partnerships with healthcare provider organizations by the end of this year, and ultimately 1 million or more U.S. volunteers by 2019.
According to the National Institutes of Health, 79 percent of survey respondents expressed support for NIH’s Precision Medicine Initiative (PMI) Cohort Program, a landmark longitudinal study designed to map the genomes of 1 million U.S. participants and make the data available to researchers with the hope it will lead to medical breakthroughs.
In addition, 54 percent indicated that they would definitely or probably participate if asked. NIH reported that this level of support for participating in the study was “fairly constant across racial and ethnic groups as well as other demographic categories.”The survey results, compiled by a team of NIH researchers who analyzed responses of 2,601 people selected randomly from a representative sample of the U.S. population, were published August 17 in the journal PLoS ONE.
“These survey results suggest that people from all walks of life will be interested in the cohort program,” said Dave Kaufman, lead author and a program director at NIH’s National Human Genome Research Institute.
“But it may take some more thought and effort to engage older people and those with fewer years of education,” he cautioned. “These results were helpful in identifying areas where the PMI Cohort Program may want to focus outreach efforts, beyond the communities that have been historically underrepresented in research.”
Among the other findings of the survey:
• Respondents expressed high rates of willingness to share many types of personal data, such as blood samples (73 percent), genetic information (76 percent), a family medical history (77 percent), soil and water samples from their home (83 percent) and data on their lifestyle, diet and exercise (84 percent). By contrast, of those with social media accounts, only 43 percent said they would share social media information.
• In considering the value of various incentives for participation, 90 percent of respondents said they believe it is important to receive information about their health. When asked what types of information they would like, 75 percent want lab results (such as cholesterol and blood sugar levels), 75 percent want genetic information, 68 percent want a copy of their medical records and 60 percent want information about other research studies relevant to their health.
• Some 76 percent of respondents agreed that “research participants and researchers should be equal partners in the study.” In particular, respondents felt that it was important for participants to help decide what kinds of research are appropriate, what to do with study results and what research questions to answer.
The goal of the PMI Cohort Program is to enroll 79,000 volunteers directly or through recruiting partnerships with healthcare provider organizations by the end of this year, and ultimately 1 million or more U.S. volunteers by 2019.
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