Bill Text: NJ A4790 | 2014-2015 | Regular Session | Amended
Bill Title: Establishes a process to integrate certain health data and other data from publicly supported programs for population health research.*
Spectrum: Moderate Partisan Bill (Democrat 9-1)
Status: (Introduced - Dead) 2015-12-17 - Substituted by S3220 (1R) [A4790 Detail]
Download: New_Jersey-2014-A4790-Amended.html
ASSEMBLY HEALTH AND SENIOR SERVICES COMMITTEE
STATEMENT TO
ASSEMBLY, No. 4790
with committee amendments
STATE OF NEW JERSEY
DATED: DECEMBER 10, 2015
The Assembly Health and Senior Services Committee reports favorably and with committee amendments Assembly Bill No. 4790.
As amended, this bill establishes a secure, Statewide, integrated Population Health Data (iPHD) Project ("Project") containing certain data collected by New Jersey administrative departments and agencies, that includes data related to health and publicly supported programs that will facilitate approved, project-by-project analysis and research and the development of the most effective means for improving the health, safety, security, and well-being of New Jersey residents and the overall cost-efficiency of government programs.
Under the bill, the Rutgers Center for State Health Policy will be required to establish an operational iPHD Project capable of securely receiving, maintaining, and transmitting data. The project will be required to meet the requirements set forth in the bill, including ensuring individually identifiable information is secured in a form that prevents disclosure, and will also be required to meet applicable HIPAA privacy and security standards. The Rutgers Center for State Health Policy will be required to organize a consortium of researchers from New Jersey academic institutions and affiliated medical schools to facilitate actionable population health research to help improve health outcomes and promote New Jersey's research institutions. Departments and agencies receiving, maintaining, and transmitting data will be required to execute the necessary data sharing agreements, and data requests and transmissions will be subject to review by the Attorney General.
Oversight of the operations of the Project will be vested in the iPHD Project Governing Board, established under the bill. The bill requires that data may be received, maintained, and transmitted only with the approval of the Governing Board and the agency or department whose data is requested. Specifically, the Governing Board will be responsible for: (1) identifying publicly supported programs data that has been created, received, or maintained by agencies that may be appropriate for receipt, maintenance, and transmission by the Project; (2) reviewing and approving the appropriateness of receiving data, including consideration of whether the transmitting department or agency has authority to collect the data, whether collection of the data is expected to further the purposes of the bill, and whether reasonable efforts have been made to ensure that the Project will receive only the appropriate data needed to accomplish the purposes of the bill; (3) reviewing and approving any necessary data use agreements or business associate agreements when data will include individually identifiable information; and (4) adopting and publishing policies and procedures for the efficient and transparent operation of the Project, including privacy and data security policies and procedures, data access policies and procedures that restrict access to appropriate entities, data retention policies identifying data that is to be returned to sponsoring agencies or destroyed when it is no longer needed by the Project, policies to require researchers to consult with subject matter experts in the datasets, and policies that establish processes to engage researchers and academic institutions across New Jersey to help set research priorities and promote the use of the Project.
The Governing Board will consist of 10 members, including: the Director of the Rutgers Center for State Health Policy, who will serve as a non-voting, ex-officio member; four public members with background expertise relevant to the Project, with one each appointed by the Speaker of the General Assembly and the President of the Senate and two appointed by the Governor; and five ex officio voting members, including the Commissioners of Health and Human Services, the State Treasurer, the Attorney General, and the Chief Information Officer for Rutgers, the State University of New Jersey, or their designees. The Commissioner of Health will serve as chair of the Board.
Public members will serve for a term of three years; of the public members first appointed to the Board, two will be appointed to terms of three years, one will be appointed to a term of two years, and one will be appointed to a term of one year. The Board will meet at least quarterly and at such other times as it determines to be necessary. The members will serve without compensation but may be reimbursed for necessary expenses incurred in the performance of their duties. The Board will be entitled to and avail itself of the assistance and services of the staff of the Department of Health and of the employees of any other State department, board, bureau, commission, or agency, as it may require and as may be available for its purposes. Members of the Board will not be liable in any civil action for actions or recommendations made in their capacity as Board members.
Members of the Board may 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, medical staff, fiduciary, contractual, creditor, or consultative relationship. A member who has or who has had such a relationship with an individual or entity involved in any matter before the Board will be required to make a written disclosure before any action is taken by the Board with respect to the matter, and will be required to make the relationship public in any meeting in which action on the matter is to be taken.
No later than 12 months following the receipt of data by the Project, and annually thereafter, the Rutgers Center for State Health Policy, in consultation with the Governing Board, will be required to publish a report that is to be made available and accessible to the public concerning the implementation of the Project, a list of data received and disclosures made, a list of publications and reports based on Project data, and a strategic plan for achieving the goals of the bill.
The Governing Board and the Rutgers Center for State Health Policy may apply for and receive funding from research and private entities, fees paid by persons and entities requesting access to Project data, and federal, State, and local grants.
COMMITTEE AMENDMENTS:
The committee amendments make several changes to the composition of the iPHD Project Governing Board: the Commissioner of Health is designated as the chair of the Board; two of the public members will be appointed by the President of the Senate and the Speaker of the General Assembly rather than by the Governor; the Secretary of State is removed from the Board; and the State Treasurer is added. In addition, the two public members appointed by the Governor will no longer require the advice and consent of the Senate.
The committee amendments provide that the Rutgers Center for State Health Policy will be required to organize a consortium of researchers from New Jersey academic institutions and from medical schools affiliated with New Jersey universities to facilitate actionable population health research to help improve health outcomes for New Jersey residents, as well as to promote New Jersey's research institutions as leaders in social science research.
The committee amendments require the Governing Board, in addition to its obligations under the original version of the bill, to develop various policies and procedures concerning data use, access, and retention and consultations and engagement with researchers and academic institutions which will further the purposes of the bill.
The committee amendments require that the Rutgers Center for State Health Policy is to publish annual public reports in consultation with the Governing Board; as introduced, the Governing Board alone was responsible for the reports.
The committee amendments clarify that departments or agencies holding data are required to approve the sharing of data that they collect, and are required to accept a data use, data sharing, or other similar agreement before being obligated to share data with the Project.
The committee amendments make several clarifying, technical, and stylistic changes, including replacing references to the "iPHD" with "iPHD Project," and replacing references to "social services data" with "publicly supported programs data."
