- Healthcare data security is a key component of the National Institutes of Health (NIH)-sponsored All of Us precision medicine research program, said Program Director Eric Dishman in opening the national enrollment for the program.
“[Data security] is one of the most important things we focus on,” said Dishman during a May 6 event in Detroit kicking off the national enrollment.
“We have protected the data warehouse where your information is encrypted and stored with the most advanced security available,” Dishman stressed. “We have done and will keep doing rigorous security testing,” he added.
Other events were held on May 6 in New York City; Chicago; Birmingham, Alabama; Kansas City, Missouri; Nashville, Tennessee; and Pasco, Washington.
Precision medicine is an approach to disease treatment and prevention that considers differences in people’s lifestyles, environments and biological makeup, including genes.
The aim of the All of Us Research Program is to enroll 1 million or more volunteers, particularly in communities that have been underrepresented in research.
“There is no such thing as a 100 percent guarantee against today’s hackers,” Dishman admitted. “So, we have created procedures and policies to quickly notify you in the event a breach should ever threaten your data or your identity.”
“All of this that we built we then tested in a beta phase with tens of thousands of you who signed up, shared your data and consent, and gave us feedback to improve the experience for everybody else,” he said.
The 21st Century Cures Act, passed in December 2016, authorized a total of $1.5 billion over ten years for the program.
NIH related that the All of Us initiative, which just completed a year-long beta test period with 25,000 volunteers, is looking to transform the relationship between researchers and participants, bringing them together as partners to inform the program’s directions, goals, and return of research information. These efforts include building trust among populations historically underrepresented in research.
The agency has funded more than 100 organizations from community groups to health centers, academic medical centers, and private companies to carry out the program. These organizations have collaborated to develop the program’s protocol and technology systems, to engage communities, to enroll participants, and to gather and store participants’ data and biological samples for use in research.
Volunteers are being asked to share different types of health and lifestyle information, including online surveys and data from electronic health records (EHRs), which will be collected over the course of the program.
The online surveys will focus on participants’ overall health and habits and where they live and work. The EHR data will offer information related to medical histories, side effects, and treatment effectiveness.
Participants will be able to access their own health information, summary data about the entire participant community, and information about studies and findings that come from All of Us.
“We in the All of Us research program believe it is your right and your choice to get your research data back about your own health,” Dishman said. “We are developing systems to give you access to all of your health information, including any health records that we collect.”
Some participants will be asked to visit a local partner site to provide blood and urine samples and to have physical measurements, such as height and weight, taken. To ensure that the program gathers information from all types of people, especially underrepresented groups, not everyone will be asked to give physical measures and samples.
In future phases of the program, children will be able to enroll, and the program will add more data types, such as genetic data.
“We are going to work with participants to pilot some new features and then we will expand those to everybody: more interactive surveys on new topics that you care about, sharing wearable and fitness device data, collecting more complete health records, using smart apps and smartphones, and responsibly sharing your genetic information once we start to do that,” Dishman said.