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.

View the Landscape Survey of Datasets Apply to Include a Dataset in Landscape List

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, 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

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