CHIC Data Delivery Awards and Other Research Data Requests

The Children's Health Informatics Core (CHIC) is proud to introduce the CHIC Data Delivery Awards. This initiative is designed to support and streamline the process for handling requests that lack funding.

This new program entails a subsidy application process, through which researchers and requesters can apply for assistance when they encounter funding constraints related to clinical data access. Our aim is to ensure that vital data delivery continues to support the critical research that drives advancements in children's health, while also ensuring sustainability of the CHIC program.

Each application will undergo a review by both the CHIC leadership team and the CHIC steering committee to select the highest quality and most promising requests. The team's goal is to ensure a fair and strategic allocation of resources.

Please contact us with any questions during this transition using the email address: researchdata@choa.org.

Sincerely,

The Children's Health Informatics Core Leadership Team

Request Submission Date

* must provide value

M-D-Y

Submitting User

Welcome to the Research Data Request Portal!

This form has 4 sections. The following outlines information that you will need to gather to complete the section. Please review the information below prior to submitting your request.

1. Requester contact information

Will need contact information for the study PI
Will need contact information for the primary contact for data-related questions (if not the PI)
Will need contact information for the Division chief

2. Basic study information

Will need study IRB number and letter
Will need data use agreement (DUA) [if applicable]
- See (link) to determine if DUA is needed
Will need study protocol (as submitted to IRB)

3. Requested dataset description

Will need list of requested data elements

4. CHIC Data Delivery Award Application only: Subsidy evaluation criteria

Will need description of analysis goals and benefits

This form is to be used for submitting RESEARCH data requests only. If your data request is related to a Quality Improvement project (i.e., you do not plan to obtain an IRB), you should submit the request here:

Children's Data Request Portal

In order to submit a research data request, you must have funding to support the request or you must apply for a subsidy unless:

This is a feasibility request (counts data only, no PHI).
This is an EPIC Reporting Workbench (RWB) request.
This is an AFLAC CRO data request.

Please select which best describes your submission.

I have funding (extramural or intramural) for this data request.

I will be applying for a subsidy (CHIC Data Delivery Award).

I am submitting a feasibility request.

I am submitting for EPIC Reporting Workbench (RWB).

I am submitting for the AFLAC CRO.

None of the above.

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For more information regarding the CHIC Data Delivery Awards and to prepare for your submission, please download the PDF below.

Attachment:CHIC Data Delivery Awards.pdf

Do you have the needed information to complete this intake form (see instructions above)?

* must provide value

Yes No
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Study Lead (i.e., PI / Co-PI)

Name
Credentials
Is the Study Lead the primary contact for data questions?
Study Role
Primary Email
Secondary Email
Affiliations (check all that apply)

Name of other institution:

Additional Study Team Member (primary contact for data questions)

Name
Credentials
Is this person the primary contact for data questions?
Study Role
Primary Email
Secondary Email

Division Information

Division Name*
Division Chief Name*
Division Chief Email*

(required*)

Other division/research group name (if not in list above):

Research Data Request Types

Feasibility Request

New Data Request (single-use)

EPIC Report (real-time)

Recurring Report (retrospective)

Report Modification

De-identified Data:

Counts-based data
NO PHI Included (none of the 18 Identifier types)

A few commonly missed PHI types include:
- zip codes
- dates associated with patients (e.g. admission dates, visit dates, birth dates)

Data extraction of discrete elements from the EHR and, in some cases, other CHOA clinical databases

Involves significant transformation from source data, challenging linkages between data tables, and/or extraction of less commonly used data.

These reports are created in EPIC Reporting Workbench
These types of reports are often used to identify prospective study participants

Reporting Portal reports (SSRS)
These reports are refreshed nightly and are current to one day prior to the current date

Updates to previously completed data requests and reports

What type of data request are you submitting?

* must provide value

New Data Request (retrospective, one-time)

Reporting Portal (SSRS) Report (retrospective, not real-time)

Feasibility Data Request

EPIC RWB Report (Real-time)

Modification to Existing Report

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Study Name

* must provide value

Have you requested a project in REDCap?

* must provide value

Yes No

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Does this request include Pediatric Health Information Systems, PHIS data? This is NOT PHI.

PHIS data includes clinical and resource utilization for inpatient, observation, ambulatory surgery and emergency department patient encounters for about 50 Children's hospitals generally used for benchmarking and research.

Click this link to view and confirm you are requesting PHIS data described above before selecting 'yes'.

* must provide value

Yes No

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What type of funding will support this data request?

* must provide value

Funding will be provided by requester

CHIC Data Delivery Award request (subsidy)

Other: AFLAC CRO, feasibility requests, EPIC RWB

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Data Extraction Fees

The Children's Health Informatics Core (CHIC) Data Delivery Awards are intended to support investigators working on projects that can lead to impactful child health research in the future.

Eligibility:

The Principal Investigator (PI) (or co-PIs) on the application must have a formal affiliation with Children's Healthcare of Atlanta (Children's) and be engaged in child health research.
Investigators with no or limited funding for the project of interest are eligible.
Projects must have well-defined aims and testable hypotheses.
A fully specified data dictionary will be required (template provided below).
Funding from this subsidy may only be used for CHIC data extraction services and reporting portal reports (SSRS).
The proposed project should strive to lead to a published manuscript and/or grant funding.
Proposals that are not awarded are eligible for resubmission in the next cycle.

Timeline:
We review applications in the following cycles:

	Application Submission Dates	Steering Committee Review Dates	Award Notification Dates
Cycle 1	September 1- November 30	December 12	December 20
Cycle 2	December 1- February 28	Tentative: March 12	March 21
Cycle 3	March 1- May 30	Tentative: June 11	June 20
Cycle 4	June 1- August 30	Tentative: September 10	September 19

Applications are due at 5 PM ET on the last date of submission for that cycle.

Each proposal will be evaluated (in relative priority order) on:

Potential for future funding
- Named grant mechanism.
- Substantial funding expected in subsequent application for CHIC (i.e. >$25K )
- Funding track record or named mentorship from faculty with funding track record.
Reusable platform that grows CHIC capabilities
- Enables new capabilities that may be used across many projects.
Trainee/early career development
- Ex: Junior faculty applying for career development award; Educationally required project to graduate.
Reputation growth for CHIC team
- Authorship opportunities for CHIC team members to improve their ability to support and demonstrate expertise.
Demonstration of use of self-service analytics tools to the extent possible
- Children's Data Stewards Program - Data Governance & Data Literacy videos
- SlicerDicer Orientation and Videos
- Participation in Children's Data Office Hours program (contact data@choa.org)
Leadership in multicenter collaboration
- Children's is a primary or very early site in a multicenter collaboration; participation contributes substantially to national pre-eminence.
Alignment with Children's mission
- Direct link to sponsored Children's system improvement area of interest
Division/Department Support
- Letter of Support demonstrating leadership interest in the project.

I agree to the Data Delivery Awards policies.

No, I do not agree to the Data Delivery Awards policies.

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Is this your first submission to the Data Delivery Award program?

* must provide value

Yes

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What changes have you made since your last submission?

* must provide value

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What type of funding source will be used to support this request?

* must provide value

Children's Foundation Donor Funds

Non-Profits & Foundations

Private Industry

State/Local Gov't

U.S. Federal Gov't

Discretionary or departmental/division funds

Other

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If you selected 'Other' for the funding source type, please describe the funding source below:

What is the funding account number?

Speedtype (if funding processed thru Emory)
Cost center (if funding process thru CHOA)

Will the dataset you are requesting include PHI (protected health information)?

Common PHI types include:

Patient names
Record IDs (e.g., MRN, HAR, CHOA ID, encounter ID)
Address information (including when only zipcodes includes)
Dates associated with patients (e.g. admission dates, visit dates, birth dates)

You can learn more about the differences between PHI, limited data sets, and de-identified data here:

https://www.hhs.gov/hipaa/for-professionals/privacy/special-topics/de-identification/index.html#standard
(See Identifiers Under Safe Harbor Method")

https://www.hopkinsmedicine.org/institutional_review_board/hipaa_research/de_identified_data.html

* must provide value

Yes No

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What level of sensitive data will be sent outside the Children's network (if any)?

Note: All external users that will have access to CHOA patient data MUST fill out a Data Use Agreement (even if de-identified)

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Level 0: No data transfers (all data will remain within Children's network. This includes NOT transferring data to the Emory network)

Level 1: Only data with no PHI (protected health information)

Level 2: Only Limited Data Set (see description of a limited data set above)

Level 3: Data with Protected Health Information (PHI) - this includes any data not covered in a limited data set (see description of PHI above)

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Is this data request for a registry or multi-center collaborative project?

Please note: Many multi-center studies or registries have extensive data requirements. These requests can take months to fullfill. If this request is unfunded, we will only be able to provide you a patient population, after which you will need to perform chart review to extract data.

* must provide value

Yes No

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All research studies should have an IRB or Non-Human Subjects Determination before collecting data, including data from EPIC (e.g., chart reviews). If you have not yet obtained these approvals for your research study, you should stop completing this research data request and return when the approvals are obtained. The CHIC data team will not be able to provide data until these approvals have been obtained.

Please provide your study documentation below.

Which IRB has reviewed your study submission?

* must provide value

CHOA Emory Other Institution I Don't Know

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Please specify the name of the other institution which completed IRB review:

IRB Number or NHSD Number (Please enter with "IRB000" or "STUDY0000" in front of the number):

* must provide value

Upload IRB Letter, IRB Authorization Agreement (IAA), or Non Human Subject Determination Letter

* must provide value

Upload file

Upload study protocol:

* must provide value

Upload file

Upload Data Use Agreement

Please note: Pediatric Institute PI's will require a Data Use Agreement (DUA) to receive the data upon fulfillment of this data request. In addition, a data use agreement (DUA) is required for all data leaving the Children's network (even if de-identified).

Please attach below or work with the Office of Sponsored Programs (OSP) to initiate this process: researchadministration@choa.org.

Upload file

Request Fulfillment Timing

The amount of time it takes to deliver your request will depend on the following (not all inclusive):

Complexity of the request (e.g. complexity of defining a specific patient population)
Number and complexity requested variables
Quality of request documentation (e.g. clearly stated goals, delineated criteria). Cutting and pasting directly from grant applications or IRB protocols may not provide the highest quality request. Additionally, if developers have to spend significant time reviewing documentation to understand the request, this will delay delivery of requested data.
Timeliness of responses to requests for additional information.
Availability of code (e.g. SQL queries) from other sites (where applicable).

Please describe any upcoming deadlines related to this request (e.g., grant submission date).

Note: We understand that it is always preferable to receive data as soon as possible. We cannot guarantee that we will be able to meet your deadline, but we will consider this information in request fullfillment.

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Please complete the request prioritization information above.

Research Feasibility Report

Please check all that apply for your request:
Please note: Feasibility requests are only allotted 5 hours to complete. CHIC should be included in the grant submission using feasibility data.

* must provide value

De-identified data

Identified/Potential funding source

Not primarily QI

None of these

Report Modifications

Enter initial request record number (record_id listed in email):

* must provide value

Please provide the following details about the existing report

Report Name
Previous Epic Developer (if unknown, write 'unknown')

Upload Modification Approval letter here (required for data request modification to be started)

* must provide value

Upload file

Upload an updated DUA if data will be shared outside of CHOA.

Please make sure the variables are updated in the new agreement. For assistance with your DUA, please contact researchadministration@choa.org.

Upload file

Please describe the requested modifications (select all that apply)

New Variables

Changes to inclusion/exclusion

Changes to report

Other

Please provide details for other changes here:

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New Research Data Report (one-time, retrospective)

Real-time Report

Retrospective Recurring Report

Summary of the data need:

* must provide value

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List of study aims (numbered list)

* must provide value

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List of hypotheses (numbered list)

* must provide value

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Description of study design and sample size (if known).

Alternatively, you can upload your study/IRB protocol below.

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Data Request Inclusion Criteria:

Dates of encounters
If population is identified by diagnosis codes, provide list of ICD codes
- If requesting visits prior to 2016, provide ICD9 codes (and include corresponding ICD10 codes)
If population is identified by procedure codes, provide list of CPT\ICD codes
Provide additional information that can help us identify population (i.e., Epic screenshots, previously used SQL query/code, etc.)

* must provide value

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Data Request Exclusion Criteria:

* must provide value

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Please provide the list of variables (< 20) that you are requesting.

Alternately, you can upload an Excel file with the list of variables:

Upload any additional supporting documents below:

Supporting document 1
Supporting document 2
Supporting document 3
Supporting document 4

Appropriate Use Data Policy
ACKNOWLEDGMENT OF RESPONSIBILITY

I understand and acknowledge that:

It is my legal and ethical responsibility as an authorized user to preserve and protect the privacy, confidentiality and security of all confidential information collected, created , derived, or maintained by Children's in accordance with the law and Children's policy.

It is my legal and ethical responsibility to ensure that all confidential information I access is required for the particular
purpose for which I am accessing, disclosing or using it.

I agree to access, use or disclose only the confidential information needed to perform my job duties, when required or permitted by law, and to disclose information only to persons who have the right to receive that information.

I agree to protect the confidentiality of any confidential information which is disclosed to me in the course of my relationship with Children's.

I agree that Children's disclosed Protected Health Information is limited in scope to the minimum Protected Health Information necessary to accomplish my purpose.

I have read and agree to abide by Children's Information Security Risk Management Policy, procedures relating to electronic communication of data of Children's Information Technology Acceptable Use Policy, proper handling and disposal of PHI information including Children's Secure Disposal, and Information Security Sanction Policy.

I understand that misconduct and/or breaches of Children's policies and procedures related to confidential information or any state or federal laws or regulations governing confidential information or violation of confidentiality may subject me to legal and/or disciplinary action up to and including immediate termination from my employment/professional
relationship with Children's, fines and imprisonment. Violation of Local, State or Federal statutes may carry the additional consequence of prosecution under the law. In addition I understand that I may be personally liable for harm resulting from my breach of this Agreement.

I have read and agree to abide by the above STATEMENT OF POLICY AND ACKNOWLEDGEMENT OF RESPONSIBILITY.

Print Name
Signature

This section gathers information that helps us understand how your request supports institutional research priorities. It also informs if completing the request will help support the sustainability of the Children's Health Informatic Core (CHIC). This information is used to evaluate your subsidy request. It is particularly critical for projects requesting data support subsidies.

The following factors influence request prioritization:

Potential for future funding. Funding is necessary for the Core's sustainability. Additionally, funding occassionally allows temporary expansion (contractors) of resources to fullfill requests.
Likelihood of authorship for those fullfilling your request. Many data requests require significant expertise and the data delivery unit includes resources such as a Board Certified Clinical Informaticist. More authorship for data delivery unit personel may contributed to stronger grant applications in the future!
Trainee/early career development involvement
Leadership in Multicenter involvement
Alignment with Children's and the Pediatric Institute respective missions
Collaboration with research partners (Emory, Morehouse, Georgia Tech)
Demonstration of use of self-service analytics tools to the extent possible
Reusable platform that grows CHIC capabilities
Division/Department Support

For additional questions or concerns, please contact researchdata@choa.org.

Prioritization criterion: Alignment with institutional mission(s)

Describe how this request supports the mission of Children's and/or the Pediatric Institute. This can include data-informed project outcomes such as:

Direct link to sponsored Children's system improvement area of interest.
Development of generalizable benchmarks to compare clinical practices across institutions
Discovery of generalizable knowledge about the efficacy of clinical treatments, processes and/or procedures
Improvement of the characterization of generalizable patient conditions

* must provide value

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Prioritization criterion: Potential for future funding

Does this project:

Have a study lead or study mentor with a track record of funding?
Have associated grant submission in progress (if so, describe the grant mechanism--e.g., K, R, other)?
Provide pilot data to support a planned grant submission (if so, describe the study hypotheses and specific aims)?
Include designated funding for data extraction by CHIC in grant submission? (i.e. >$25K)
Include CHIC member(s) as co-investigator(s) on a grant submission?

Please describe if any of these apply (type "na" otherwise):

* must provide value

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Prioritization criterion: Trainee and/or junior faculty development

Does this project:

Include a junior faculty member or trainee as a lead study member (e.g., intended first author)?
Include trainees on the study team (not as primary author/investigator)?
Meet a requirement for graduation or completion of training?
Provide preliminary results needed for a career development award submission (including K, F, T, or local grants)?

Please describe if any of these apply (type "na" otherwise):

* must provide value

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Prioritization criterion: Manuscript authorship for CHIC team

Extraction of data from the EHR involves significant training, technical knowledge, and often clinical expertise (e.g. in the case of a Board Certified Clinical Informaticist). Authorship opportunities for the Children's Health Informatics Core (CHIC) team improve biosketches, core descriptions for Facilities documents, and other factors that improve our ability to demonstrate the value of the Core's work.

Note: Authorship would only be expected when other authorship criteria are met (e.g. composition contribution to and/or significant review of a publication).

Please describe authorship opportunities for CHIC team members as part of this project (select all that apply):

* must provide value

Authorship opportunity available for EPIC developer(s) who extract the dataset

Authorship opportunity available for Clinical Informaticist(s) who provide data extraction consulting services

No authorship opportunity available --- Do not plan to submit any manuscript based on these data

No authorship opportunity available --- Data extraction work not expected to meet authorship contribution levels (e.g., time for data extraction expected to be < 3 hours)

Prioritization criterion: Advance multicenter research

Does this request relate to multicenter research (i.e., This is a large/existing collaborative OR This is a new/small collaborative OR We are establishing/Leading the collaborative)?

Will Children's be a primary or very early site in a multicenter collaboration (participation contributes substantially to national pre-eminence)?

If so, please describe in more detail below.

If this request does not relate to multicenter research, type "na".

* must provide value

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Prioritization criterion: Reusable platorm that grows CHIC capabilities

Does this request enable new capabilities that may be used across many projects? Please describe below.

If not, type "na".

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Prioritization criterion: Demonstrated use of self-service tools

Have you participated in or used any of the following:

· Children's Data Stewards Program - Data Governance & Data Literacy videos

· SlicerDicer Teaching

· Participation in Children's Data Office Hours program (contact data@choa.org)

If so, please list and share useful data received. This can be attached below. Please do not include any PHI.

If not, type "na".

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Prioritization criterion: Division Support

Please upload a Letter of Support demonstrating leadership interest in the project.

Upload file

What deliverables are you expecting from this project? Check all that apply.

* must provide value

Manuscript

Abstract

Poster/Oral Presentation

Other

Describe other deliverable

* must provide value

What journal are you planning to submit to?

* must provide value

Proposed deadline for a completed manuscript

* must provide value

M-D-Y

Are you planning on submitting to a conference?

* must provide value

Yes

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How many conferences are you planning to submit to?

* must provide value

Name of conference 1

* must provide value

Deadline to submit for conference 1

* must provide value

M-D-Y

Name of conference 2

* must provide value

Deadline to submit for conference 2

* must provide value

M-D-Y

Name of conference 3

* must provide value

Deadline to submit for conference 3

* must provide value

M-D-Y

Name of conference 4

* must provide value

Deadline to submit for conference 4

* must provide value

M-D-Y

Name of conference 5

* must provide value

Deadline to submit for conference 5

* must provide value

M-D-Y

You have entered a deadline that is too close to the award notification date, resulting in a turnaround less than the minimal turnaround policy. This may negatively impact the scoring of your application.

* must provide value

I understand that I am submitting an award request with a deadline that does not follow the core's timeline policy and this may negatively impact the scoring of my application.

Is there any additional information you would like the reviewers to be aware of?

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Thank you for completing the research data request intake form! We will be in touch.

Division Chief

Was this proposal awarded?

* must provide value

Yes

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Award Number

* must provide value

How many hours was this proposal awarded?

* must provide value

Applicaton feedback:

* must provide value

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Title Combined

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IRB Combined

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IRB Institution Combined

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IRB Docs Combined

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Data Shared/PHI Combined

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Funding Combined

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Mark field as:

[Clear value]

NI, No information (100)

You have selected an option that triggers this survey to end right now.

To save your responses and end the survey, click the 'End Survey' button below. If you have selected the wrong option by accident and/or wish to return to the survey, click the 'Return and Edit Response' button.

CHIC Data Delivery Awards and Other Research Data Requests

Instructions

Welcome to the Research Data Request Portal!

This form has 4 sections. The following outlines information that you will need to gather to complete the section. Please review the information below prior to submitting your request.

1. Requester contact information

Will need contact information for the study PI

Will need contact information for the primary contact for data-related questions (if not the PI)

Will need contact information for the Division chief

2. Basic study information

Will need study IRB number and letter

Will need data use agreement (DUA) [if applicable]

See (link) to determine if DUA is needed

Will need study protocol (as submitted to IRB)

3. Requested dataset description

Will need list of requested data elements

4. CHIC Data Delivery Award Application only: Subsidy evaluation criteria

Will need description of analysis goals and benefits

This form is to be used for submitting RESEARCH data requests only. If your data request is related to a Quality Improvement project (i.e., you do not plan to obtain an IRB), you should submit the request here:

In order to submit a research data request, you must have funding to support the request or you must apply for a subsidy unless:

Do you have the needed information to complete this intake form (see instructions above)?

1. Requester Contact Information

Study Lead (i.e., PI / Co-PI)

Additional Study Team Member (primary contact for data questions)

Division Information

2. Funding and Basic Study Information

3. Dataset Description

Please complete the request prioritization information above.

Appropriate Use Data Policy
ACKNOWLEDGMENT OF RESPONSIBILITY

I understand and acknowledge that:

It is my legal and ethical responsibility as an authorized user to preserve and protect the privacy, confidentiality and security of all confidential information collected, created , derived, or maintained by Children's in accordance with the law and Children's policy.

It is my legal and ethical responsibility to ensure that all confidential information I access is required for the particular
purpose for which I am accessing, disclosing or using it.

I agree to access, use or disclose only the confidential information needed to perform my job duties, when required or permitted by law, and to disclose information only to persons who have the right to receive that information.

I agree to protect the confidentiality of any confidential information which is disclosed to me in the course of my relationship with Children's.

I agree that Children's disclosed Protected Health Information is limited in scope to the minimum Protected Health Information necessary to accomplish my purpose.

4. CHIC Data Delivery Awards Evaluation Criteria:

You have entered a deadline that is too close to the award notification date, resulting in a turnaround less than the minimal turnaround policy. This may negatively impact the scoring of your application.

5. Decision

You have selected an option that triggers this survey to end right now.

CHIC Data Delivery Awards and Other Research Data Requests

Instructions

Welcome to the Research Data Request Portal!

This form has 4 sections. The following outlines information that you will need to gather to complete the section. Please review the information below prior to submitting your request.

1. Requester contact information

Will need contact information for the study PI

Will need contact information for the primary contact for data-related questions (if not the PI)

Will need contact information for the Division chief

2. Basic study information

Will need study IRB number and letter

Will need data use agreement (DUA) [if applicable]

See (link) to determine if DUA is needed

Will need study protocol (as submitted to IRB)

3. Requested dataset description

Will need list of requested data elements

4. CHIC Data Delivery Award Application only: Subsidy evaluation criteria

Will need description of analysis goals and benefits

This form is to be used for submitting RESEARCH data requests only. If your data request is related to a Quality Improvement project (i.e., you do not plan to obtain an IRB), you should submit the request here:

In order to submit a research data request, you must have funding to support the request or you must apply for a subsidy unless:

Do you have the needed information to complete this intake form (see instructions above)?

1. Requester Contact Information

Study Lead (i.e., PI / Co-PI)

Additional Study Team Member (primary contact for data questions)

Division Information

2. Funding and Basic Study Information

3. Dataset Description

Please complete the request prioritization information above.

Appropriate Use Data Policy ACKNOWLEDGMENT OF RESPONSIBILITY

I understand and acknowledge that:

It is my legal and ethical responsibility as an authorized user to preserve and protect the privacy, confidentiality and security of all confidential information collected, created , derived, or maintained by Children's in accordance with the law and Children's policy.

It is my legal and ethical responsibility to ensure that all confidential information I access is required for the particular purpose for which I am accessing, disclosing or using it.

I agree to access, use or disclose only the confidential information needed to perform my job duties, when required or permitted by law, and to disclose information only to persons who have the right to receive that information.

I agree to protect the confidentiality of any confidential information which is disclosed to me in the course of my relationship with Children's.

I agree that Children's disclosed Protected Health Information is limited in scope to the minimum Protected Health Information necessary to accomplish my purpose.

4. CHIC Data Delivery Awards Evaluation Criteria:

You have entered a deadline that is too close to the award notification date, resulting in a turnaround less than the minimal turnaround policy. This may negatively impact the scoring of your application.

5. Decision

You have selected an option that triggers this survey to end right now.

Appropriate Use Data Policy
ACKNOWLEDGMENT OF RESPONSIBILITY

It is my legal and ethical responsibility to ensure that all confidential information I access is required for the particular
purpose for which I am accessing, disclosing or using it.