Frequently Asked Questions (FAQs)
What is the New Jersey iPHD Project?
The New Jersey Integrated Population Health Data (iPHD) Project was signed into law on January 11, 2016. The goals of the iPHD are to establish a process to integrate health and other data from publicly supported programs for population health research to: 1) improve public health, safety, security, and well-being of New Jersey residents, and 2) improve cost-efficiency of government assistance programs.
By creating a process for linking datasets across New Jersey agencies, the iPHD Project expects to facilitate research that generates important new knowledge that will benefit New Jersey residents through the development of innovative and effective programs and policies.
What are the research priorities of the iPHD?
iPHD research priorities are established by the iPHD Governing Board. The Board has approved the following four (4) research priorities:
- Informing New Jersey’s integrated approach to addressing the opioid epidemic
- Improving maternal and infant health
- Assuring access to physical and behavioral health services and addressing social determinants of health
- Conducting analyses to support New Jersey's response to COVID-19 and other public health emergencies
Who are members of the iPHD Governing Board, and what is their role?
The iPHD Governing Board consists of six ex officio members or their designees, including the Commissioners of Health and Human Services, State Treasurer, Attorney General, Rutgers Chief Information Officer, and the Director of Rutgers Center for State Health Policy (a non-voting member). In addition to the ex officio seats, there are two public appointments by the Governor and one each by the Senate President and the Speaker of the Assembly that will all serve fixed terms on the Board. The public members are selected to represent: 1) an organization capable of advocating on behalf of persons whose data may be received, maintained or transmitted by the iPHD, 2) an individual with experience in human subjects research who is affiliated with a research university in New Jersey, 3) an individual with legal expertise and interest in protecting the privacy and security of individually identifiable information, and 4) an individual with technical expertise and interest in the creation and maintenance of large data systems and data security.
How are potential conflicts of interest handled when a researcher is affiliated with either an individual on the Governing Board or the member’s professional organization?
As stated in the iPHD Bylaws: A Member of the Governing Board shall not participate in deliberations or vote on any matter before the Board concerning an individual or entity with which the Member has, or within the last 12 months has had, any substantial ownership, employment, fiduciary, contractual, creditor, or has interests in the outcome of the research that may lead to a personal advantage and that might, therefore, in actuality or appearance compromise the integrity of the research. A Member who has, or who has had, such a relationship with an individual or entity involved in any matter before the Board shall make a written disclosure before any action is taken by the Board with respect to the matter, shall make the relationship public in any meeting in which action on the matter is to be taken, and recuse themselves from voting on Board actions on the matter. All Governing Board members are subject to those sections of the New Jersey Conflicts of Interest Law pertaining to Special State Officer (N.J.S.A. 52:13D et seq.). The recusal of a Member to avoid a conflict does not affect that Member’s participation being considered for a quorum.
What is the role of Rutgers Center for State Health Policy?
The iPHD law authorizes project operations within Rutgers Center for State Health Policy, including administrative oversight and responsibility for securely receiving, maintaining, linking, and transmitting data in accordance with the legislation and applicable federal and state laws and regulations.
What is the iPHD Research Consortium?
The iPHD law requires that a consortium of researchers from New Jersey academic institutions and from medical schools affiliated with New Jersey universities be organized by Rutgers Center for State Health Policy to facilitate actionable population health research to help improve health outcomes for New Jersey residents, as well as promote New Jersey’s research institutions as leaders in social science research.
The first Research Consortium webinar was convened on June 1, 2022. We invite you to view the webinar recording and presentation slides.
To receive updates about the iPHD Research Consortium, join our iPHD mailing list.
What data sets will be part of the iPHD?
The Governing Board has approved bringing five (5) data sets from the New Jersey Department of Health into the iPHD: New Jersey Birth Data, New Jersey Mortality Data, New Jersey Hospital Discharge Data Collection System, and the COVID-19 surveillance data from the New Jersey Communicable Disease Reporting and Surveillance System (CDRSS). The New Jersey Emergency Medical Services (EMS) data will be available in 2023. Visit the iPHD Data page for more information including available date range and data dictionaries. It is anticipated that additional data sets will become available in the future.
What are the advantages of linking administrative data sets?
Linking administrative data across government programs allows for rigorous cross-sector analysis, which can improve programs and practices through evidence-based policymaking.
Will data be linked on a per-project basis, or will there be standard linkages?
Data linkages will be project specific. In the future, we will explore a master patient index for linking multiple datasets. The linkage strategy will be documented.
Will the data sets include identifiable information?
The iPHD will provide de-identified data 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 to be distributed by the iPHD will be de-identified using the “Safe Harbor Method” where 18 specific identifiers of individuals or of their relatives, employers, or household members of the individual are removed.
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.
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.
Are applicants permitted to reuse the data for some other project?
Yes, the iPHD will permit reuse for other studies within a certain time frame, but applicants will be required to submit a new application. Some additional fees may apply.
For how long can a researcher access the iPHD data?
A researcher can access the iPHD upon full execution of a Data Use Agreement (DUA) between the researcher(s) and Rutgers University for a period of time outlined in the DUA.
Will national or state-level data outside of New Jersey be available from iPHD?
At this time, the iPHD Governing Board has approved only New Jersey datasets to be included in the iPHD Project.
iPHD Data Security
How will confidentiality and privacy be protected in the iPHD?
The iPHD data are secured in a high-performance HIPAA-compliant environment at Rutgers Institute for Health, Health Care Policy and Aging Research that meets the stringent standards required to store highly sensitive datasets. The iPHD Project complies with all applicable federal and state laws and regulations governing the privacy and security of personal health information (PHI) and other data, including, but not limited to HIPAA, 42 CFR Part 2, and other federal and state laws and regulations applicable to data received or distributed by the iPHD Project.
What agreements will need to be executed to access the iPHD data?
The iPHD Project may provide data access to researchers only when the project has been approved by the iPHD Governing Board and a project-specific Data Use Agreement (DUA) between Rutgers University and researcher has been executed. The DUA is required to ensure the researcher is in compliance with all applicable privacy and security standards, including, but not limited to, HIPAA, when such data includes individually identifiable information that is protected health information as defined under HIPAA.
Is this type of data sharing legal?
Yes, sharing data through the iPHD Project is legal and in accordance with federal and state laws and 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.
How will researchers destroy the data once the project is over?
Specific guidance regarding the destruction of data will be included in the DUA, which will include a data management and security plan.
iPHD Application Process
What is the process for applying for access to iPHD data?
Applicants for authorized use of iPHD data must submit a letter of intent followed by an application for data use as established by the iPHD Governing Board. For detailed instructions and forms, please visit the Application Process page.
Upon approval, all required iPHD Data Use Agreements must be executed by the applicant (i.e., Authorized Data User) and Rutgers (on behalf of the Center for State Health Policy).
Is Institutional Review Board approval required in order to access iPHD data?
Yes, when the applicant is undertaking generalizable research, the review and determination of an Institutional Review Board is required to access the iPHD data. 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.
How will applications for access to iPHD data be reviewed and approved?
iPHD applications will first be reviewed the iPHD Research Advisory Committee, composed of representatives from research institutions and/or New Jersey state agencies, as well as subject matter experts (SMEs). Each proposal will be reviewed by a minimum of three (3) reviewers.
The Committee will 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 factors. The Research Advisory Committee will then make a recommendation to the Governing Board, who will consider, but not be bound by, the Research Advisory Committee before approving any application for data from the iPHD project.
Will funding be available for projects using iPHD data?
Yes, limited funding will be available to support up to two (2) pilot projects and up to two (2) full or partial waivers of data fees (without pilot awards) in 2023. Upon approval by the Governing Board, awards for each pilot project will total up to $30,000 for 12 months.
Applicants for pilot funding or fee waivers must be led by a principal investigator from a New Jersey research institution. Support for pilot funding and fee waivers are provided by the New Jersey Department of Health and are contingent on the continued availability of funds.
Who will be eligible to apply for access to iPHD data?
The following individuals and organizations will be eligible to apply for data access upon availability, providing the data will be used in service of the iPHD project goals:
- Faculty or staff academic researchers, including students under the direct supervision of a faculty member or professional research staff member of a post-secondary educational research institution;
- Research staff from the legislative, executive branch and judicial branches, or other governmental entity of New Jersey state or local government;
- Research staff from private or public organizations;
- Research staff from organizations that provide services or engage in research projects determined by the Governing Board to further the mission and purpose of the iPHD Project as declared by the Legislature at N.J.S.A. 30:4D-65.
Can researchers outside New Jersey submit request for iPHD data?
Yes, data access is open to researchers from institutions outside of New Jersey, provided the proposed research supports the goals established by the New Jersey Legislature as outlined in N.J.S.A. 30:4D-65.
However, funding support (pilot award or fee waiver) does require the participation of at least one (1) principal investigator from a New Jersey research institution.
If an organization outside of NJ has satellite locations in New Jersey, are researchers in the orgazanization eligible to apply for funding and/or fee waivers?
Researchers in an organization with satellite locations in New Jersey are welcome to apply for data, but are not eligible for pilot funding or data fee waiver.
Can I apply for more than one research project?
Yes, you may submit multiple applications, but each project must focus on the research priorities approved by the iPHD Project.
What is the timeline for application review and data delivery?
The applications must first be reviewed by the Research Advisory Committee with a final decision rendered by the iPHD Governing Board. It is expected that application notification will be provided within 8-12 weeks following submission.
Following application approval and execution of all Data Use Agreements, data delivery can be expected within 4-8 weeks.
These time frames are subject to change.
Are there application and user fees for the iPHD?
For projects approved for data access without pilot funding or fee waiver, please refer to the fee schedule. The NJ and non-NJ fees are uniform across all NJ and non-NJ institutions, respectively.
For projects that are awarded pilot funding or fee waiver, no application or data access fees will be charged.
What do the data fees cover?
The iPHD fee schedule is established to cover the costs of iPHD operations on a break-even basis using methods set forth for NIH-Funded Core Facilities. Please see the fee schedule for more detail.
Whom do I contact if I need technical assistance after receiving the dataset?
All technical questions should be sent via email to firstname.lastname@example.org. An initial acknowledgement will be sent within two (2) working days after receipt.
What are the reporting requirements for the researchers?
Authorized Data Users are required to submit a final report to the CSHP within 60 days of the conclusion of the project. The iPHD Project will provide guidance on the content of the reports, which will include, but may 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.
All portions of the final report will be presented to the Governing Board and made public except where such release would violate prior publication restrictions of materials submitted for peer-reviewed publication or would otherwise violate copyrights. All reports, publications, and other public presentations of statistical data derived from iPHD data must adhere to iPHD Acceptable Use Guidelines to assure individual privacy and confidentiality.