Data and Research Core (DRC)

Address research priorities and needs to form an inclusive basis for conducting equity-focused AI/ML research targeting the use of electronic health records

The mission of the AIM-AHEAD Data and Research Core (DRC) is to broaden the diversity and representation of healthcare data in AI/ML and expand its availability to diverse teams of researchers to address health disparities.

 

The DRC is not a single database. Instead, AIM-AHEAD seeks to catalyze an ecosystem of datasets to help address the lack of population diversity in data used in AI/ML models.

Data Set Options for AIM-AHEAD-funded Research 

The following data sources are options for projects teams to propose for AIM-AHEAD-funded research projects. Applicants may also propose other data sources for their projects. As noted in the right column, AIM-AHEAD data partners provide extra services to facilitate access and mentorship to AIM-AHEAD-approved project teams. 

Source

Description

Data Allowed

Access Notes 

A customized subset from OCHIN Community Health Equity Database

EHR data from underserved communities

HIPAA Limited Data Set, individual-patient level data with dates and geographic indicators if needed for research

AIM-AHEAD Data Partner* with facilitated access, concierge services for funded projects. Available through AIM-AHEAD Service Workbench, data use agreement and IRB required. (see below)

Data Bridge from MedStar Health

(Curated data from the MedStar Health EHR)

EHR data from hospital system network with 31% African American patient representation

Multiple curated dataset options (further detail on website) pre-curated or custom curated de-identified EHR, Limited Dataset, Full PHI EHR dataset, Imaging, Select clinical notes, select genomics data, synthetic data

AIM-AHEAD Data Partner* with facilitated access, concierge services for funded projects. Available through MedStar Health, data use agreement and IRB required. (see below)

       

60+ studies from NHLBI BioData Catalyst

Selected large-scale cohorts related to heart, lung, blood and sleep disorders. Includes both prospective clinical studies and associated genomic TOPMED data.

De-identified dataset. Including individual level genomic (TOPMED full genomes) and clinical datasets.

Available on NHLBI BioData Catalyst Infrastructure. Requires approval of Data Access Request; most datasets require IRB.

Selected 15 Open datasets on AWS

A variety of datasets available including clinical and genomic data

Public data, and controlled access data (depends on dataset)

Available on AIM-AHEAD Service Workbench; access requirements depend on the dataset. 

NIH All of Us

The All of Us Research Program is building one of the largest biomedical data resources of its kind.

The All of Us Research Hub stores health data from a diverse group of participants from across the United States.

Available on All of Us Research Workbench, requires registration and institutional use agreement.

The ScHARe Data Ecosystem

ScHARe is a cloud-based research collaboration platform developed by the National Institute on Minority Health and Health Disparities and the  National Institute of Nursing  Research

Google-hosted Public Datasets

ScHARe-hosted Public Datasets

ScHARe-hosted Project Datasets



See reference document

 

The DRC and Infrastructure Core also collaborate to assist AIM-AHEAD awardees in locating other data sources to support their projects. As part of its mission to diversify datasets used in AI/ML, AIM-AHEAD has conducted a landscape survey to raise awareness about datasets that may be of interest to the research community. Each dataset has its own governance process and rules for access.

 

 

 

AIM-AHEAD Data Partners 

AIM-AHEAD-funded projects may apply to receive facilitated access and data concierge services from AIM-AHEAD data partners that emphasize historically under-resourced and under-represented populations: 

 

 

OCHIN Community Health Equity Database OCHIN, a nonprofit health care innovation center with a core mission to advance health equity, operates the most comprehensive database on primary healthcare and outcomes of safety net patients in the U.S., connected by OCHIN’s Epic EHR system, representing 6 million patients from 170 health systems and 1,600 clinic sites across 33 states. LEARN MORE
Data Bridge from MedStar Health The MedStar Health System and the MedStar Health Research Institute (MHRI) include an extensive network of clinical facilities in the mid-Atlantic region, including 10 hospitals and over 200 affiliated facilities connected by MedStar’s Cerner EHR system, representing 5 million unique patients, approximately 31% of whom are African American. LEARN MORE

How AIM-AHEAD Data Partners Expand Representation

     

Race

People who select a single race other than White, or who select more than one race

2,620,875

2,467,865

Ethnicity 

People who select an ethnicity other than those listed under the race of White 

2,224,7561

2,233,438

Age

<18 years old and 65 years and above

1,337,789

1,424,082

Sexual and Gender Minority

  • People who self-report intersex as their sex at birth
  • People who select any sexual orientation choice other than straight 
  • People who select any gender identity choice other than man or woman 

249,9782

Not well-captured

Income

Annual household income < $25,000

4,129,925

Not well-captured

Education

People without a high school diploma or GED

Not well-captured but FQHCs generally higher than general population

2,560

Access to Care

Needed a medical visit in the past 12 months but cannot readily use the health care system or pay for needed care

Not well-captured but FQHCs generally higher than general population

Not well-captured

Geography

Residents of established rural and non-metropolitan zip codes, based on the HRSA Federal Office of Rural Health Policy data files

1,072,666

36,3453

Disability 

People with a physical, functional, cognitive, or other condition that substantially limits one or more life activities

632,5744

266,2264

Source: All of Us reference UBR categories  

1People with Hispanic ethnicity and any race  

2People  with ‘other’ sex or non-straight sexual orientation or non-male, non-female gender identity  

3Based on rural and suburban hospital discharges

4Based on ICD codes for disability in study by Clark et al , including physical, visual, hearing, intellectual/developmental disabilities

Data & Research Core (DRC) Office Hours

 

Discover the power of AIM-AHEAD provided data. AIM-AHEAD offers diverse data resources from a variety of data providers for your Call for Proposal (CFP) needs. For applicants interested in OCHIN and AADB data, our teams are eager to support your research proposals and are offering several office hours leading up to the CFP application date. We have found that past years’ applicants who have attended office hours have a better understanding of our data offerings and have created strong proposals. Our interactive sessions provide an opportunity to ask detailed questions from experienced research analysts, explore aggregate data via Cohort Discovery, and strategize scientific approaches to your research. We’re also happy to point you towards other valuable AIM-AHEAD resources which might be a better fit for your research proposal. Your success is our priority. 


OCHIN’s Office Hour sessions will be tailored to applicants interested in the Research Fellowship Program, but anyone is welcome to attend. For applicants interested in using OCHIN data for other AIM-AHEAD programs, we recommend setting up an individual consult by submitting a DRC Intake form.

 

The AIM-AHEAD Data Bridge (AADB) Office Hours are open for all researchers interested in any of the AIM-AHEAD programs. We urge all applicants to review the AADB Data Offerings to optimally leverage the office hours. For applicants who would like methodological consultation, please submit an AADB Request Form.

 

May 2024

Monday

Tuesday

Wednesday

Thursday

Friday





 

1

2

3

6

OCHIN10 – 11am PT /
1 – 2pm ET
Link to Register/Join

AADB

1 – 2pm PT / 4 – 5pm ET

Link to Register/Join

7

8


OCHIN9 – 10am PT /
12 – 1pm ET
Link to Register/Join


AADB

11- 12pm PT/ 2-3pm ET

Link to Register/Join

9

10

13

OCHIN

1 – 2pm PT / 4 – 5pm ET
Link to Register/Join

14

15


OCHIN11 – 12pm PT /
2 – 3pm ET
Link to Register/Join


AADB

11- 12pm PT/ 2-3pm ET

Link to Register/Join

16

17

AADB

7 – 8am PT / 10 – 11am ET

Link to Register/Join

20

OCHIN10 – 11am PT /
1 – 2pm ET
Link to Register/Join


AADB

1 – 2pm PT / 4 – 5pm ET

Link to Register/Join

21

22


AADB

11- 12pm PT/ 2-3pm ET

Link to Register/Join

23
OCHIN11 – 12pm PT /
2 – 3pm ET
Link to Register/Join

24

27

28

OCHIN9 – 10am PT /
12 – 1pm ET
Link to Register/Join

29

OCHIN11 – 12pm PT /
2 – 3pm ET
Link to Register/Join


AADB

11- 12pm PT/ 2-3pm ET

Link to Register/Join

30

31

AADB

7 – 8am PT / 10 – 11am ET

Link to Register/Join



June 2024

Monday

Tuesday

Wednesday

Thursday

Friday

3
OCHIN10 – 11am PT /
1 – 2pm ET
Link to Register/Join


AADB

1 – 2pm PT / 4 – 5pm ET

Link to Register/Join

4

OCHIN1 – 2pm PT /
4 – 5pm ET
Link to Register/Join

5

OCHIN10 – 11am PT /
1 – 2pm ET
Link to Register/Join


AADB

11- 12pm PT/ 2-3pm ET

Link to Register/Join

6

7

10
OCHIN9 – 10am PT /
12 – 1pm ET
Link to Register/Join


AADB

1 – 2pm PT / 4 – 5pm ET

Link to Register/Join

11

OCHIN9 – 10am PT /
12 – 1pm ET
Link to Register/Join

12


AADB

11- 12pm PT/ 2-3pm ET

Link to Register/Join

13
OCHIN
10 – 11am PT /
1 – 2pm ET
Link to Register/Join

14

 

DRC Leadership

Keith Norris
Keith Norris
Lead MPI (Interim)

University of California Los Angeles

Nawar Shara
Nawar Shara
MPI

MedStar Health Research Institute

Josh Lemieux
Josh Lemieux
Co-I

OCHIN

Stephen Fernandez
Stephen Fernandez
Co-I

MedStar Health Research Institute

Erin Hernandez
Erin Hernandez
Project Director

OCHIN

Robert Schuff
Robert Schuff
Data Science Lead

OCHIN

Wyatt Bensken
Wyatt Bensken
Investigator

OCHIN

Sara Stienecker
Sara Stienecker
Co-Director

MedStar Health — Georgetown University CoLab

Taona Haderlein
Taona Haderlein
Investigator

OCHIN

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