It may seem like a daunting task to get 1 million people to share their health data for the Precision Medicine Initiative Cohort Program, but a new survey shows that most patients approve of the program.
Nearly 80 percent of the 2,600 participants surveyed by the National Institutes of Health said they support the program and 54 percent said they would “definitely” or “probably” take part in it. The survey also found that there were no “significant differences” in support when participants were broken into demographic groups such as gender, age, race or ethnicity.
The survey results are “extremely promising,” study author Kathy L. Hudson, Ph.D., deputy director for science, outreach and policy at NIH, said in an announcement. She said that “they show that after people learn about the PMI Cohort Program they’re supportive, and they recognize the value in taking part.”
However, about 30 percent of the participants said they probably would not participate, and 16 percent said they would definitely not.
Having more than 1,000 people say they would be willing to be part of the PMI is promising news, but getting to that 1 million will take a lot of effort on the part of the healthcare industry and the government.
The national research cohort of 1 million people will take about three to four years to assemble, NIH Director Francis Collins has said previously. In addition, NIH has announced $55 million in grants for organizations to build infrastructure for the program.
When asked what was the most important incentive for participating, almost all of those surveyed said “learning information about my health.” About 80 percent said they’d participate if they got paid for their time and 77 percent would take part if they got healthcare services as well.
However, the study authors said the numbers from the survey should not be used as a basis for specific enrollment predictions because people who chose to take part may be more in favor of such research than the general population.