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All of Us Research Program Programmatic Update; A Glimpse of Mental Health Data in All of Us

The All of Us Research Program is a historic effort to collect and study data from one million or more people living in the United States. The goal of the program is better health for all of us. The program began national enrollment in 2018 and is expected to last at least 10 years.

Dr. Holly Garriock

Acting Director, Division of Scientific Programs

All of Us Research Program, NIH




October 5, 2020

NIMH Joint Alliance-Coalition for Research Progress Town Hall

Goals

  • In the next 10 minutes I will share with you:
    • Brief Updates from the All of Us Research Program
      • Enrollment updates
      • COVID-19 priority areas
      • Overview of the COVID-19 Participant Survey (COPE)
    • Preliminary peeks at mental health data available in the All of Us dataset
    • Future plans for Mental Health Campaign

Enrollment Highlights

More than 357,000 participants have enrolled in the program, including more than 271,000 who have provided physical measurements and biospecimens.

*Numbers as of September 10, 2020

Data snapshot from the All of Us program showing there are more than 100 funded partner organizations and more than 320 sites collecting samples and measurements.
Data snapshot from the All of Us program showing that more than 50% of participants are from racial and ethnic minorities, and more than 80% of participants are underrepresented in biomedical research.
Data snapshot from the All of Us program showing that there are more than 228,000 electronic health records and more than 277,000 biosamples in the data.

View our Data Snapshots 

All of Us Response to COVID-19

All of Us COVID-related activities:

  • Digital enrollment and retention (in-person visits paused March 16 through July 13)
  • Self-report data through surveys (COPE Survey)
  • Participant serum sample antibody testing (10k)
  • Standardize EHR information on COVID-19 symptoms, associated health problems, and the effects of different medicines and treatments. Over 4,000 participants who have shared their EHR have been tested for COVID-19.
  • All of Us is exploring a collaboration with Accelerate COVID-19 Therapeutic Interventions and Vaccines (ACTIV). ACTIV  is a public-private partnership to develop a coordinated research strategy for prioritizing and speeding developments of the most promising treatments and vaccines.

All of Us publicly announced its activities  surrounding COVID-19 on June 16.

(Digital) Enrollment and Retention

Bar graph showing digital enrollment (light blue) and retention (dark blue) in the COPE survey as a function of time between February 18, 2020 through September 15, 2020. Digital retention spiked as enrollment dropped. Digital activities ramped up each time the All of Us program released a survey, which was done on a monthly cadence in May, June, and July.

Digital retention spiked as enrollment dropped. COPE survey showed significant spikes.

Types of Mental Health Data available in the All of Us Dataset

EHR

  1. Conditions
  2. Drug Exposures
  3. Procedures (e.g. screening)

Survey Questions

  1. Personal Medical History
  2. Family Medical History
  3. COPE: anxiety, depression, suicide

https://databrowser.researchallofus.org/ 

Example of "Mood Disorder" in Data Browser

Screenshot of the data browser from https://databrowser.researchallofus.org/, if one were to type “mood disorder” in the browser. The image shows age at first occurrence in the electronic health record by number of participants. Over 35,000 participants have mood disorders in their electronic health records.

over 35k adult participants with 'mood disorder' in EHR; https://databrowser.researchallofus.org/ 

Example of 'Suicidal' in Data Browser

Top 6 Conditions by Descending Participant Counts

Screenshot of the data browser from https://databrowser.researchallofus.org/, if one were to type “suicidal” in the browser. The image shows number of participants by electronic health record terms. Over 3,750 participants have suicidal thoughts in their electronic health records.

>3,750 participants with 'suicidal' in EHR

Example of 'Schizophrenia' in Data Browser

Top 10 Conditions by Descending Participant Counts

Screenshot of the data browser from https://databrowser.researchallofus.org/, if one were to type “schizophrenia” in the browser. The image shows number of participants by electronic health record terms. Over 2,100 participants have schizophrenia in their electronic health records.

Diversity of EHR entries for 'schizophrenia'; https://databrowser.researchallofus.org/ 

COPE Survey Overview: May, June, July

Mental health and well-being

  • optimism
  • general well-being
  • generalized anxiety (GAD7)
  • depression and suicidal ideation (PHQ9)
  • perceived stress
  • posttraumatic stress symptoms
  • physical activity
We focused on information we could not get easily from EHRs and could change in response to COVID-19.

Social information

  • social support
  • loneliness
  • resilience

COVID-19 specific

  • impact on work/childcare from COVID-19
  • COVID specific symptoms and testing
  • social distancing compliance
  • impact of COVID-19
  • coping with social isolation

Basic information

  • current employment
  • health insurance coverage and selection

Substance use

  • alcohol use
  • electronic nicotine use
  • drug use

We focused on information we could not get easily from EHRs and could change in response to COVID-19

Underrepresented in Biomedical Research (UBR) Completions of COPE

Bar chart showing COPE survey participant demographics for May, June, and July, 2020. Approximately two thirds of participants who took the survey each month were underrepresented in biomedical research.

Approximately two thirds of participants who took the COPE survey each month were UBR in at least one category.

Of the COPE Respondents, ~30% endorse anxiety or depression symptoms

Bar chart showing percent of COPE survey participants who endorsed anxiety or depression symptoms in May, June, and July, 2020. Approximately 30% of survey takers endorsed severe mental health conditions.

Suicide Prevention Message Over Time in COPE

Bar chart showing percent of COPE survey participants who received a suicide prevention message in May, June, and July, 2020. The suicide prevention message popped up 7% of the time.

Types of Mental Health Data available in the All of Us Dataset

Now

EHR

  1. Conditions
  2. Drug Exposures
  3. Procedures (e.g. screening)

Survey Questions

  1. Personal Medical History
  2. Family Medical History
  3. COPE: anxiety, depression, suicide

Future

EHR

  1. Conditions
  2. Drug Exposures
  3. Procedures (e.g. screening)

Survey Questions

  1. Personal Medical History
  2. Family Medical History
  3. COPE: anxiety, depression, suicide
  4. Mental Health and Well-being

Digital Health Technology

  1. Mood Module

View our Data Snapshots 

Campaign launch timeline is To Be Determined

Graphic displaying three components of the All of Us mental health campaign, which will include the mental health and well being survey, mood module, and snap questions. Communications around education and awareness related to mental health will be built into the campaign.

For more information

Left: All of Us logo ,Middle:Social media logos, Right: NIH logo

NIMH Information Resource Center

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Phone:  1-866-615-6464 
Live Online Chat:  Talk to a representative 
Email:  nimhinfo@nih.gov 
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Mail:  National Institute of Mental Health 
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Bethesda, MD 20892-9663