NIH Begins Beta Testing for Research Program
The National Institute of Health has announced that it has begun enrolling its first participants as beta testers for the All of Us Research Program.
The mission of the program is to accelerate health research and medical breakthroughs, enabling individualised prevention, treatment, and care for all. The beta testers will help find problems within the system and processes, so the institute can fix them accordingly and improve the experience. Most importantly, they will help in evaluating and improving the message, engagement approaches, and relationship building with diverse communities across the country.
Enrollment will begin slowly with the enrolment process scaling up and eventually expanding to more than 100 sites nationally during the beta phase. The partners will begin testing on a staggered schedule through early fall, each enrolling a handful of participants a day to start, and inviting more when ready, with a total of at least 10,000 people across the country.
A lot of work has been carried out beforehand to get the institute to where they are today. Last July, they assembled a nationwide team of universities, medical centres and technology companies to enrol participants and collect data and blood and urine samples. They then completed preliminary pilot studies and focus groups to learn from members of the public about their interests and questions concerning research participation.
Soon after a research protocol was developed, including an initial set of surveys. Investment took place in a biobank and they built “big data” IT systems to transfer and store data, with safeguards in place to keep participants’ information private and secure. After reaching out for feedback from dozens of organisations they issued a funding opportunity to support engagement efforts with community partners large and small.
Ultimately, the institute hopes to build a community at least one million strong, with participants from all works of life and parts of the country. The research will be easily accessible to researchers of all kinds, from citizen scientists to investigators in academia and industry, for studies on a variety of health topics.