Want access to the All of Us Research Program genomic data? Here’s how to get started. - Vibrent
Blog | March 24, 2022

Want access to the All of Us Research Program genomic data? Here’s how to get started.

By Molly Bryant, Vice President, Marketing

Over the past 5 years, the research community has watched as the National Institutes of Health (NIH) rapidly assembled an ambitious medical research program, the All of Us Research Program.

The All of Us Research Program aims to speed up future medical research by recruiting one million or more people from across the U.S. to share their data about their genome, health, habits, and environment.

Vibrent Health powers participant data collection and participant engagement via the Participant Technology Systems Center (PTSC) for the All of Us Research Program, and so we were thrilled to join the NIH in an exciting announcement on March 18, 2021: The first genomics data is now available to researchers!

This announcement is especially exciting because of the level of diversity in the All of Us Research Program data.

Historically, many communities, including racial and ethnic minorities, those who live in rural areas, and LGBTQ+ people, have often been underrepresented in biomedical research. Because of this, researchers and health providers know less about the health of these populations, resulting in potentially less effective prevention and treatment strategies. 

A lack of diversity has been especially evident in genomic studies. In fact, more than 90% of participants across genome studies come from European ancestry.

The genomic data in the All of Us Research Program dataset represents an unprecedented level of diversity, including nearly 50% of participants self-identifying with minority racial and ethnic groups. 

How did the All of Us Research Program reach such a high level of diverse participants?

This level of diversity in a participant dataset is a major milestone, and the NIH has made outreach to underrepresented groups a priority.

The All of Us Research Program has prioritized accessibility and diversity throughout the study. And one critical way the program has done that is by using technology to scale and improve the way that they serve all populations in research across the United States.

In fact, the All of Us Research Program is using Vibrent Health’s Digital Health Research Platform to provide multiple modes of communication. These include:

  • An on-demand, available anywhere participant portal
  • Communication via email, SMS, and automated direct mail
  • Computer Assisted Telephone Interviews (CATI)
  • Direct mail

Perhaps some of the most impressive results have come from the program’s use of CATI. Authenticated interviewer staff can access only a limited portion of a patient’s record during a telephone interview thus protecting patient privacy and confidentiality. They use their own login credentials and must secure permission from the patient.

The All of Us Research Program has to date completed over:

  • 12,500 CATI sessions, and
  • 18,898 survey completions.

Over 90 percent of those sessions were conducted with patients in under-represented groups. Additionally, 23 percent of these CATI sessions were in Spanish.

What does the All of Us Research Program announcement mean for researchers?

The All of Us research program has released nearly 100,000 whole genome sequences via the Researcher Workbench. The Researcher Workbench is a cloud-based platform where registered researchers can access All of Us research data.

If you have access to the data platform, you can access this genomic data, alongside clinical, lifestyle, and wearable data (collected through Vibrent Health’s platform for the All of Us Research Program).

This combination of genotype and phenotype data allows researchers to better understand how genes can cause or influence diseases in the context of other health determinants to ultimately enable more precise approaches to care for all populations, something that has not been possible in the past

How can researchers get access to the All of Us Research Program data?

Getting access to the Researcher Workbench data is easy, but two things need to be true.

  • You need to be a registered researcher with an institution that has a Data Use and Registration Agreement in place with the All of Us Research Program.
  • That agreement also needs to include the Controlled Tier level if you aim to access genomic data.

Here’s how to get started:

  1. Check your institution’s access by visiting the Institutional Agreements page. 
  2. If your institution has access, visit the Register page for information on the steps you will need to complete.
  3. Then visit the Access page to register as an All of Us researcher. 
  4. If your institution does not have a Data Use and Registration Agreement (DURA) in place with All of Us, or if your institution’s current DURA does not yet allow for Controlled Tier access, start the process here

The All of Us Research Program also urges researchers to check with their local institutional review board (IRB) to make sure you remain in compliance with your local requirements for conduct of research. To make it easy, they even include a template of language on their site.

How much does accessing the research data cost?

The great news for researchers is that there is no cost to register with the All of Us Research Program and to begin working with the dataset. However, you could incur costs for data storage and computing results.

Each registered Researcher Workbench user receives $300 in initial credits from the All of Us Research Program. You’ll need to cover additional charges through your billing account. 

The All of Us Research Program also provides resources to help researchers estimate costs within the Researcher Workbench itself, on the User Support Hub. Find some examples on how much it could cost to analyze genomic data here (login required).

What kind of data access is available to researchers?

The data available in the All of Us Research Program is available to everyone through a Public Tier of access today. Anyone can access a data set that includes de-identified aggregate data from the research program.

You can use Data Snapshots and the Data Browser, an interactive tool on the Research Hub.

But researchers who want access to more comprehensive datasets have two options.

If your institution already has a DURA in place with the All of Us Research Program, you have one of two access tiers.

Registered Tier

This access level exposes a curated dataset with individual-level data for approved researchers. This data set includes:

  • Data from electronic health records (EHRs)
  • Data from participant wearables
  • Participant surveys
  • Physical measurements taken at the time of participant enrollment

Controlled Tier

This access level is the one that includes the genomic data just announced. This contains genomic data in the form of whole genome sequencing (WGS) and genotyping arrays, previously suppressed demographic data fields from EHRs and surveys, and unshifted dates of events.

More information is available in the All of Us Data Dictionary.

What can researchers do with the All of Us Research Program data?

If you have access to the Researcher Workbench, there are a number of things you’ll be able to do. These include:

  • Organizing research projects
  • Collaborating with others
  • Create notebooks using R or Python
  • Save collections of health information about cohorts
  • Create cohorts

How is Vibrent Health involved with the All of Us Research Program data?

Vibrent Health provides the platform that facilitates participant e-consent to donate their biosamples as well as delivering genomics results from the program to participants.

The Vibrent Health Digital Health Research Platform also provides additional capabilities to the All of Us Research Program and to other research programs that include:

  • eConsent
  • Participant recruitment
  • Surveys and data collection
  • EHR integration and data harmonization
  • Participant communications
  • Engagement of participants
  • Appointment scheduling for biospecimens
  • Computer assisted telephone interviewing (CATI)
  • Direct mail

Our digital tools power the All of Us Research Program to collect required digital health data including clinical, lifestyle, and wearable data that is used in conjunction with participants’ genomic data for precision health research. 

And our technology also provides participants with full access to their data, including the genomic data, in a single place.

Get information about how Vibrent Health is powering more diverse research, including genomics and precision health programs.

The announcement by the NIH is incredibly exciting for researchers, but also for those participating in the program. Research that truly represents all of our population is what will yield optimum health interventions for all, reduce health disparities and achieve equity.

Want more information about how Vibrent Health is powering genomics, precision health, and other research programs? Get in touch today.

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