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| 1 | | promulgated thereunder. |
| 2 | | "Participating institutions" means institutions that |
| 3 | | have an institutional review board or access to an |
| 4 | | institutional review board that is in compliance with the |
| 5 | | United States Department of Health and Human Services |
| 6 | | Office of Human Research Protections and are a State |
| 7 | | university, Tier I or Tier II academic medical center, an |
| 8 | | association incorporated in Illinois that (i) possesses a |
| 9 | | demonstrated research capacity and (ii) is determined by |
| 10 | | the Department to represent a broad number of providers who |
| 11 | | serve recipients of medical assistance under Article V of |
| 12 | | the Illinois Public Aid Code, and any other entity |
| 13 | | designated by the Department. |
| 14 | | "Research" means a systematic investigation, including |
| 15 | | research development, testing, and evaluation designed to |
| 16 | | develop or contribute to generalizable knowledge. |
| 17 | | "Tier I and Tier II academic medical centers" has the |
| 18 | | meaning given to those terms under Section 5-5e.2 of the |
| 19 | | Illinois Public Aid Code. |
| 20 | | (b) The General Assembly finds that the Illinois Medicaid |
| 21 | | program is undergoing a transition to managed care for Medicaid |
| 22 | | populations subject to the Medicaid Reform Act of 2011, the |
| 23 | | Save Medicaid Access Together Act of 2012, and other Acts |
| 24 | | affecting Medicaid populations and delivery systems. The |
| 25 | | General Assembly further finds that Illinois possesses an |
| 26 | | abundance of academic research entities with expertise in the |
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| 1 | | academic fields related to health care practices, health |
| 2 | | outcomes, special needs populations, and health care delivery |
| 3 | | design. To that end, the General Assembly additionally finds |
| 4 | | that: |
| 5 | | (1) A lawful and well-regulated dissemination of |
| 6 | | Medicaid data to qualified researchers is the best way to |
| 7 | | create accurate and creative unbiased analysis and |
| 8 | | information about the Illinois Medicaid Program that will |
| 9 | | lead to better health outcomes at a lower cost. |
| 10 | | (2) Accurate research findings should be made |
| 11 | | available to the Illinois General Assembly from a variety |
| 12 | | of independent qualified research entities. |
| 13 | | (3) As the Medicaid program transforms from a fee for |
| 14 | | service system to a system based on capitated contracts, |
| 15 | | there must be sufficient transparency in those contracts to |
| 16 | | allow for evaluation of their effectiveness by the |
| 17 | | legislature through receipt of data analysis performed by |
| 18 | | qualified independent research institutions. |
| 19 | | (c) Notwithstanding any other provisions of law to the |
| 20 | | contrary, the Department is hereby authorized and directed to |
| 21 | | provide the individual patient medical claims information, |
| 22 | | including individual data for services provided through |
| 23 | | capitated contracts, of medical assistance participants to |
| 24 | | participating institutions for the analysis purposes for which |
| 25 | | the State Funded Health Care Quality Assurance and Research |
| 26 | | Fund is created, as specified in Section 6z-101 of the State |
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| 1 | | Finance Act. The patient medical claims information shall only |
| 2 | | include the Medicaid recipient identification number in |
| 3 | | addition to other individual medical claims patient data that |
| 4 | | has been de-identified in accordance with HIPAA so as to |
| 5 | | qualify as a limited data set under HIPAA, and shall only be |
| 6 | | shared in accordance with HIPAA. Information identifying |
| 7 | | health plans and health care providers shall be made available |
| 8 | | only in the event the research study commissioned by the |
| 9 | | General Assembly through the Commission on Government |
| 10 | | Forecasting and Accountability or the Department requires that |
| 11 | | such information be analyzed. The Department, and |
| 12 | | participating institutions must enter into data sharing |
| 13 | | agreements and business associate agreements to ensure privacy |
| 14 | | protection, HIPAA compliance, and to safeguard the security and |
| 15 | | confidentiality of such records. The Department shall make as |
| 16 | | much data available as possible in order to promote |
| 17 | | transparency and unencumbered data analysis. |
| 18 | | The data shall be shared electronically with each |
| 19 | | participating entity on a State fiscal year basis once the data |
| 20 | | year is considered complete, and not longer than 8 months after |
| 21 | | the close of the State fiscal year. A complete State fiscal |
| 22 | | year data set will be based on dates of service during a State |
| 23 | | fiscal year and shall be considered complete when sufficient |
| 24 | | time after the fiscal year has occurred to process all claims |
| 25 | | and make corrections to improperly filed claims. Data for |
| 26 | | fiscal years prior to the passage of this amendatory Act of the |
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| 1 | | 99th General Assembly shall be made available if requested by |
| 2 | | the participating institution and the data are available to the |
| 3 | | Department. |
| 4 | | Participating institutions and entities may, at their own |
| 5 | | expense and consistent with rules adopted by the Department, |
| 6 | | produce research reports related to the purposes of this |
| 7 | | amendatory Act of the 99th General Assembly, provided that all |
| 8 | | patient medical claims information has been aggregated and |
| 9 | | de-identified. Participating institutions and entities may not |
| 10 | | use such medical claims information for commercial purposes or |
| 11 | | otherwise transfer any such medical claims information to any |
| 12 | | other entity. Nothing in this amendatory Act of the 99th |
| 13 | | General Assembly shall be construed as prohibiting a |
| 14 | | participating institution and entity from partnering with |
| 15 | | another entity, either voluntarily or by contract, to produce |
| 16 | | research reports, so long as no individually identifiable data |
| 17 | | is shared with the participating institution or entity. |
| 18 | | Any data received under this Section must be used solely |
| 19 | | for research purposes by the research entity and the |
| 20 | | confidentiality of any data provided to authorized individuals |
| 21 | | pursuant to this Section must be maintained in accordance with |
| 22 | | the provisions of this Section and other applicable laws. Any |
| 23 | | use of the data for commercial purposes in violation of this |
| 24 | | Section shall be subject to fines and penalties specified |
| 25 | | herein, including the loss of access to data. |
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| 1 | | Section 10. The State Finance Act is amended by adding |
| 2 | | Section 6z-101 as follows: |
| 3 | | (30 ILCS 105/6z-101 new) |
| 4 | | Sec. 6z-101. State Funded Health Care Quality Assurance and |
| 5 | | Research Fund. The State Funded Health Care Quality Assurance |
| 6 | | and Research Fund is created. The State Funded Health Care |
| 7 | | Quality Assurance and Research Fund shall consist of receipts |
| 8 | | from State fund transfers, including the Healthcare Provider |
| 9 | | Relief Fund, and contributions from participating |
| 10 | | institutions, as that term is defined under Section 5-30.2 of |
| 11 | | the Illinois Public Aid Code. Any receipts from the federal |
| 12 | | government related to expenditures from the State Funded Health |
| 13 | | Care Quality Assurance and Research Fund shall be deposited |
| 14 | | into the Healthcare Provider Relief Fund. All interest earned |
| 15 | | on moneys in the State Funded Health Care Quality Assurance and |
| 16 | | Research Fund shall be deposited in the State Funded Health |
| 17 | | Care Quality Assurance and Research Fund. |
| 18 | | The State Funded Health Care Quality Assurance and Research |
| 19 | | Fund shall be appropriated to the Department of Healthcare and |
| 20 | | Family Services. The purpose of the State Funded Health Care |
| 21 | | Quality Assurance and Research Fund is to provide the Illinois |
| 22 | | General Assembly and the Department with independent analysis |
| 23 | | of: |
| 24 | | (1) the efficacy of State managed care programs to |
| 25 | | improve the patient experience of health care, and the |
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| 1 | | health of the population, and to reduce costs of health |
| 2 | | care; |
| 3 | | (2) the efficacy of the Department of Healthcare and |
| 4 | | Family Services in monitoring healthcare outcomes in |
| 5 | | managed care and other settings; |
| 6 | | (3) the efficacy of State managed care programs to |
| 7 | | improve continuity of care, ensure adequate provider |
| 8 | | participation, and maintain appropriate utilization of |
| 9 | | health services; |
| 10 | | (4) any possible gaps in healthcare for populations |
| 11 | | served by the State and recommendations on how to close |
| 12 | | them; |
| 13 | | (5) successful outcomes and best practices in |
| 14 | | improving the health of the population and the quality of |
| 15 | | care while reducing the cost; |
| 16 | | (6) in combination with other data sources, the impact |
| 17 | | of managed care on the social determinants of health as |
| 18 | | well as on non-clinical outcomes, such as employment and |
| 19 | | educational attainment; and |
| 20 | | (7) the degree to which appropriate mechanisms are in |
| 21 | | place to assess the Department of Healthcare and Family |
| 22 | | Services' internal quality assurance processes. |
| 23 | | Appropriations to the Commission on Government Forecasting |
| 24 | | and Accountability from the State Funded Health Care Quality |
| 25 | | Assurance and Research Fund may be made by the General Assembly |
| 26 | | through an appropriation from the Fund and either a law or a |
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| 1 | | resolution of either chamber authorizing the study, including |
| 2 | | the reasons for the study, the direction to the Commission on |
| 3 | | Government Forecasting and Accountability to contract for the |
| 4 | | study, the question or questions the study will answer, the |
| 5 | | requirement that the Department and other relevant State |
| 6 | | entities cooperate with the selected contractor, and the date |
| 7 | | the report is due. Appropriations from the State Funded Health |
| 8 | | Care Quality Assurance and Research Fund may also be used to |
| 9 | | pay for the costs to the Commission on Governmental Forecasting |
| 10 | | and Accountability of developing and reviewing contract |
| 11 | | proposals. Nothing in this amendatory Act of the 99th General |
| 12 | | Assembly requires that the Commission on Government |
| 13 | | Forecasting and Accountability award a contract to a |
| 14 | | participating institution. |
| 15 | | Each participating institution, as that term is defined |
| 16 | | under Section 5-30.2 of the Illinois Public Aid Code, may |
| 17 | | choose to participate in the State Funded Health Care Quality |
| 18 | | Assurance and Research Fund and the associated research by |
| 19 | | annually contributing up to $250,000 into the Healthcare |
| 20 | | Provider Relief Fund. Based upon the number of participants, |
| 21 | | the costs to the Department of Healthcare and Family Services, |
| 22 | | and the appropriations made to the Department of Healthcare and |
| 23 | | Family Services and the Commission on Forecasting and |
| 24 | | Governmental Accountability, the Department shall determine |
| 25 | | the contribution amount for participants. All participants |
| 26 | | shall pay the same amount. In the event that the research data |
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| 1 | | described in Section 3.1 of the Commission on Government |
| 2 | | Forecasting and Accountability Act is not provided to the |
| 3 | | participating entities or the research data or similar data is |
| 4 | | shared with an entity not identified in Section 3.1 free of |
| 5 | | charge, each entity shall be refunded the amount they each paid |
| 6 | | into the State Funded Health Care Quality Assurance and |
| 7 | | Research Fund. |
| 8 | | The State shall transfer into the State Funded Health Care |
| 9 | | Quality Assurance and Research Fund, from the Healthcare |
| 10 | | Provider Relief Fund, an amount equal to the contributions made |
| 11 | | by participating entities. |
| 12 | | Any use of the data for commercial purposes or for another |
| 13 | | purpose not authorized under Section 5-30.2 of the Illinois |
| 14 | | Public Aid Code shall result in loss of access to the data for |
| 15 | | a period of one year after the data year the last data set had |
| 16 | | been received, no refunding of the fees authorized under this |
| 17 | | Section, and a fine of $2,500 for each violation, which shall |
| 18 | | be deposited into the State Funded Health Care Quality |
| 19 | | Assurance and Research Fund.
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| 20 | | Section 99. Effective date. This Act takes effect upon |
| 21 | | becoming law.".
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