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Frequently Asked Questions (FAQs)

Application Process

What is the process for applying for access to iPHD data?

iPHD currently offers two application cycles annually.  The cycle dates are listed on the iPHD events calendar. Please note that data sets cannot be purchased directly and all applicants must go through the formal iPHD application process. 

Applicants must first submit a non-binding Letter of Intent (LOI) within three weeks of the cycle opening. The full application is then due three weeks after the LOI submission. Detailed instructions and required application forms are available on the Application Process page.

Will a decision be made based on the letter of intent (LOI)?

No, the letter of intent is non-binding, though required to submit a full application. The LOI will not be considered during the review process, and the final Governing Board decision is based on the full application, not the LOI.

What are the application fees, and are fee waivers available?

An iPHD fee schedule has been established to offset some of the administrative costs associated with the processing of iPHD applications, including the preparation and release of data. The iPHD fees have been approved by Rutgers University Cost Accounting Office and are uniformly applied to both NJ and non-NJ institutions. Please see the fee schedule for details. 

Fee waivers are offered periodically, based on the availability of funding.  To be eligible to receive a fee-waiver, at least one (1) principal investigator must be affiliated with a New Jersey institution. Researchers from organizations with satellite locations in New Jersey are welcome to apply for data but are not eligible for fee waivers.  See the iPHD website for more details on fee waivers.

Can researchers outside of New Jersey apply for access to iPHD data?

Yes, we encourage applications from institutions outside of New Jersey, provided the proposed research supports the goals established by the NJ Legislature as outlined in N.J.S.A. 30:4D-65. However, non-New Jersey institutions are not eligible to receive fee waivers.

How are applications reviewed?

Applications undergo an initial review by the iPHD Research Advisory Committee (RAC), composed of more than 70 researchers from diverse disciplines from across academic institutions around the country.    The RAC reviewers consider the research qualifications of the applicant(s), the validity of the proposed research methods, alignment with the approved research priorities, and data security, among other criteria.  The final determination on data release is made by the Governing Board.

What are common reasons for rejecting an application for iPHD data?

Common reasons why requests for data are rejected include, but are not limited to: 

  • Misalignment with iPHD research priorities 
  • Scientific merit of the application  
  • Application incomplete or submitted in a manner inconsistent with the RFA; 
  • Application received after the deadline; and
  • Applicant provided misleading or inaccurate answers
What is the expected timeline for application review and data delivery?

The Research Advisory Committee (RAC) first reviews the applications with the final decision rendered by the iPHD Governing Board. Application notification will be provided within 12-18 weeks following submission of the application.

Following application approval and from the date of execution of all Data Use Agreements, data delivery can be expected within 4-12 weeks, depending on the specific data linkage request.  Time frames are subject to change.

Data Access & Structure

What agreements and approvals are required before an approved applicant can access iPHD data?

Before receiving iPHD data, all approved applicants must provide the following:  

  1. Data Use Agreement (DUA), which outlines the terms and conditions for ensuring data security and privacy. As part of the DUA, a Data Management Plan must also be submitted to ensure proper handling and storage of the data;   

  1. Proof of Institutional Review Board (IRB) approval from their home institution, ensuring that their research complies with ethical and regulatory standards. The Institutional Review Board must be organized under the Federal Human Subject Research protection regulations (45 CFR Part 46) and hold a Federalwide Assurance with the Office of Human Subject Research Protection;  and 

  1. Payment of data fees (if applicable).

For applicants awarded a fee waiver, the DUA and the IRB must be completed within six (6) months of notification of approval. A one-time 30-day extension may be requested in writing if additional time is needed.

What datasets are available in the iPHD?

Visit the iPHD Data page for more information including currently available data, date ranges and data dictionaries. Additional data sets will be made available in the future and the website will be updated accordingly.

How does iPHD enable researchers to track individuals across different data sources?

iPHD provides linked datasets with a unique study ID that allows researchers to track individuals across different data sources without reidentification.  Investigators are responsible for defining and creating their cohorts using the linked data we provide.

How are data files structured, and in what format are files delivered? How are data files structured, and in what format are files delivered?

Data files are structured by data source and year. Files are delivered as SAS data files.

Will the datasets include identifiable information?

The iPHD will provide de-identified data where feasible or a HIPAA-compliant limited data set (LDS) to researchers approved to receive data from the iPHD.

De-identified data: Section 164.514(b) of the HIPAA Privacy Rule provides the standard for de-identification of protected health information. Under this standard, health information is not individually identifiable if it does not identify an individual and if the covered entity has no reasonable basis to believe it can be used to identify an individual. De-identified datasets using the “Safe Harbor Method” exclude 18 specific identifiers of individuals or of their relatives, employers, or household members of the individual, as listed below:   

1) Names 

2) All geographic subdivisions smaller than a state, including street address, city, county, precinct, ZIP code, and their equivalent geocodes except for the initial three digits of the ZIP code 

3) All elements of dates (except year) for dates that are directly related to an individual, including birth date, admission date, discharge date, death date, and all ages over 89 and all elements of dates (including year) indicative of such age, except that such ages and elements may be aggregated into a single category of age 90 or older 

4) Telephone numbers 

5) Vehicle identifiers and serial numbers, including license plate numbers 

6) Fax numbers 

7) Device identifiers and serial numbers 

8) Email addresses 

9) Web Universal Resource Locators (URLs) 

10) Social security numbers 

11) Internet Protocol (IP) addresses 

12) Medical record numbers 

13) Biometric identifiers, including finger and voice prints 

14) Health plan beneficiary numbers 

15) Full-face photographs and any comparable images 

16) Account numbers 

17) Any other unique identifying number, characteristic, or code, except as permitted by the Privacy Rule for re-identification; and 

18) Certificate/license numbers 

Limited data set (LDS): Pursuant to 45 C.F.R. § 164.514(e) (2), an LDS excludes most of the identifiers described above but may include one or more of the following: 

  • Dates such as admission, discharge, service, date of birth, date of death; 
  • Municipality, state, zip code; and 
  • Ages in years, months or days or hours 

Limited data sets released by the iPHD will include only the minimum necessary information needed to complete the approved research project and use of the LDS will be governed by a Data Use Agreement.   

Please see the Department of Health and Human Services, Health Privacy Information website or the HIPAA legislation for additional information.

Will the iPHD team subset the data into specific cohorts for my project?

No, the iPHD team provides data based on the requested data sources and years in your application. It is the responsibility of the investigator to subset the data to create specific cohorts.

Can I request additional data years after my application is submitted?

Researchers may only request data years that are available at the time of the application cycle, as listed on the iPHD website and application materials.

However, if additional data years become available after application submission but prior to initiation of the IRB and Data Use Agreement (DUA), researchers may choose to either: 

  • Retain their original data request; or 
  • Request the newly available data year(s), subject to additional data fees as outlined in the iPHD fee schedule. 

iPHD staff will notify researchers of any newly available data years at the time of application approval and ask them to confirm their final data years. This selection is considered final. All required agreements, including the DUA and IRB, must align with the confirmed data years. Researchers may not delay data transfer in anticipation of future data availability. 

If researchers wish to obtain additional data years after their final selection, they must submit a written request to the Governing Board for review and approval. If approved, the researcher will be responsible for: 

  • Paying any applicable data fees per the current fee schedule; and 
  • Paying an additional processing fee if staff time is required to prepare an updated dataset and related updated compliance agreements (billed at an hourly rate). 

This option may only be used once per project. 

Please note: This policy applies only to requests for additional data years. If a researcher wishes to request a different dataset than originally submitted, a new application is required and will be subject to standard iPHD review procedures. 

Can iPHD data be linked to other non-iPHD datasets?

Linkages between iPHD data and other datasets are evaluated for technical feasibility and HIPAA-compliance to ensure linkages do not enable the re-identification of individuals.  Additional fees may apply for linking external data. For those receiving a fee waiver, please note that these additional linkage fees may not be covered.

Can I request additional data years after my application is submitted?

Researchers may only request data years that are available at the time of the application cycle, as listed on the iPHD website and application materials. ​

However, if additional data years become available after application submission but prior to initiation of the IRB and Data Use Agreement (DUA), researchers may choose to either: ​

  • Retain their original data request; or ​
  • Request the newly available data year(s), subject to additional data fees as outlined in the iPHD fee schedule. ​

iPHD staff will notify researchers of any newly available data years at the time of application approval and ask them to confirm their final data years. This selection is considered final. All required agreements, including the DUA and IRB, must align with the years requested. Researchers may not delay data transfer in anticipation of future data availability. ​

If researchers wish to obtain additional data years after their final selection, they must submit a written request to the Governing Board for review and approval. If approved, the researcher will be responsible for: ​

  • Paying any applicable data fees per the current fee schedule; and ​
  • Paying an additional processing fee if staff time is required to prepare an updated dataset and related compliance agreements (billed at an hourly rate). 

This option may only be used once per project. 

Please note: This policy applies only to requests for additional data years. If a researcher wishes to request a different dataset than originally submitted, a new application is required and will be subject to standard iPHD review procedures.

Policies & Requirements

What are acceptable uses of iPHD data?

The access and use of iPHD data will only be approved by the Governing Board if in accordance with both of the following purposes: 

  • Improve the health, safety, security, and well-being of the residents of New Jersey or, improve the cost-efficiency of government assistance programs; and  
  • Perform research that is consistent with the research priorities approved by the iPHD Governing Board and authorized by an Institutional Review Board.
How will researchers be required to destroy the data once the project is over?

Specific guidance regarding the destruction of data is included in the DUA, which includes a data management and security plan.  The applicant is responsible for the compliant destruction of the iPHD data, pursuant to the terms of the DUA.

What are the reporting requirements for researchers?

Researchers (Authorized Data Users) must submit a final report to Rutgers Center for State Health Policy within 60 days of the conclusion of the project. If a project extension is approved, a progress report will be required. The iPHD Project will provide guidance on the content of the reports, which may include, but not be limited to: 

  • A brief summary of project findings; 
  • A bibliography of all reports, publications, and presentations under development and completed using iPHD data; and 
  • Copies of all publications, reports, and presentations.
How long can researchers access the iPHD data?

Data access is granted for 12 months, as specified in the Data Use Agreement (DUA). The DUA period may be extended with the approval of the  iPHD.

Data Security

How does iPHD protect confidentiality and comply with federal & state laws?

The iPHD Project complies with all applicable federal and state laws, including HIPAA and other regulations. Questions regarding the permissibility of sharing data are adjudicated by the Office of Attorney General for the State of New Jersey, which provides legal counsel to the iPHD Governing Board.

What is the obligation of the researcher in maintaining iPHD data security?

Applicants are required to comply with all terms and conditions outlined in the Data Use Agreement. This includes completion of a Data Management Plan, which requires the researcher to complete and submit to iPHD for approval prior to data release.

Logistics & Support

Whom do I contact if I need assistance?

Questions should be sent via email to iphd@ifh.rutgers.edu. An initial acknowledgement will be sent within two (2) business days after receipt.

How can I stay updated on changes to the iPHD?

Updates are shared via the iPHD website and on LinkedIn, as well as through CSHP’s LinkedIn, X, and Bluesky pages. You can also sign up for our mailing list to receive news and updates from iPHD.

Stay in Touch

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