1 of 1 HOUSE DOCKET, NO. 2117 FILED ON: 1/15/2025 HOUSE . . . . . . . . . . . . . . . No. 1358 The Commonwealth of Massachusetts _________________ PRESENTED BY: Marjorie C. Decker _________________ To the Honorable Senate and House of Representatives of the Commonwealth of Massachusetts in General Court assembled: The undersigned legislators and/or citizens respectfully petition for the adoption of the accompanying bill: An Act advancing health care research and decision-making centered on patients and people with disabilities. _______________ PETITION OF: NAME:DISTRICT/ADDRESS :DATE ADDED:Marjorie C. Decker25th Middlesex1/15/2025 1 of 4 HOUSE DOCKET, NO. 2117 FILED ON: 1/15/2025 HOUSE . . . . . . . . . . . . . . . No. 1358 By Representative Decker of Cambridge, a petition (accompanied by bill, House, No. 1358) of Marjorie C. Decker relative to health care research and decision-making centered on patients and persons with disabilities. Health Care Financing. The Commonwealth of Massachusetts _______________ In the One Hundred and Ninety-Fourth General Court (2025-2026) _______________ An Act advancing health care research and decision-making centered on patients and people with disabilities. Be it enacted by the Senate and House of Representatives in General Court assembled, and by the authority of the same, as follows: 1 SECTION 1. Chapter 118E of the General Laws is hereby amended by adding the 2following section: 3 Section 80: Patient-Centeredness 4 Section 80 (a) Standards for Patient-Centeredness in Research & Analysis. The Division 5of Medical Assistance shall ensure that any portfolio of research and analysis relied upon for 6decision-making, whether provided by a state agency or a third party, impacting enrollee access 7to healthcare treatments and services, meets standards of patient-centeredness. The Division of 8Medical Assistance shall publicly provide a summary of patient-centeredness standards for any 9such analysis that includes, but is not limited to: 10 1) Evaluation of a range of research and analysis that includes outcomes prioritized by 11patients and people with disabilities within a specific disease area. If necessary, the Division of 2 of 4 12Medical Assistance will commission a survey of patients to identify relevant outcomes within a 13disease area. 14 2) Evaluation of a range of research and analysis that looks at relevant patient subgroups 15to ensure consideration of important differences in preferences and clinical characteristics within 16patient subpopulations. 17 3) Scientific Rigor: The Division of Medical Assistance shall require research and 18analysis to comply with good research practices, defined as consideration of the full range of 19relevant, peer-reviewed evidence (e.g., real-world evidence, research from range of sponsors 20including manufacturers), avoid patient harm through over-interpretation of findings of 21“inconclusive” evidence of clinical differences and instead allow time for conduct of additional 22research. 23 (b) Prohibition on Reliance on Discriminatory Measures. The Division of Medical 24Assistance shall not develop or utilize, directly or indirectly through a contracted entity or other 25third-party, a dollars-per-quality adjusted life year or any similar measures or research in 26determining whether a particular health care treatment is cost effective, recommended, the value 27of a treatment, or in determining coverage, reimbursement, appropriate payment amounts, cost- 28sharing, or incentive policies or programs. 29 (c) Appeals and Physician Override Mechanisms. The Division of Medical Assistance 30may not implement any policy limiting patient access to healthcare treatment and services which 31does not contain an appeals or physician override mechanism. Physicians may not be 32discriminated against or otherwise negatively impacted for utilizing available physician override 33mechanisms. 3 of 4 34 SECTION 2. Chapter 6D of the General Laws is hereby amended by adding the 35following section: 36 Section 20. Patient-Centeredness Standards for Health Policy Commission Reviews 37 Section 20 (a) Standards for Patient-Centeredness in Research & Analysis. The Health 38Policy Commission shall ensure that any portfolio of research and analysis relied upon for 39determining the value of a healthcare treatment or service , whether provided by a state agency 40or a third party, impacting enrollee access to healthcare treatments and services, meets standards 41of patient-centeredness. The Health Policy Commission shall publicly provide a summary of 42patient-centeredness standards for any such analysis that includes, but is not limited to: 43 1) Evaluation of a range of research and analysis that includes outcomes prioritized by 44patients and people with disabilities within a specific disease area. If necessary, the Health Policy 45Commission will commission a survey of patients to identify relevant outcomes within a disease 46area. 47 2) Evaluation of a range of research and analysis that looks at relevant patient subgroups 48to ensure consideration of important differences in preferences and clinical characteristics within 49patient subpopulations. 50 3) Scientific Rigor: The Health Policy Commission shall require research and analysis to 51comply with good research practices, defined as consideration of the full range of relevant, peer- 52reviewed evidence (e.g., real-world evidence, research from range of sponsors including 53manufacturers), avoid patient harm through over-interpretation of findings of “inconclusive” 54evidence of clinical differences and instead allow time for conduct of additional research. 4 of 4 55 (b) Prohibition on Reliance on Discriminatory Measures. The Health Policy Commission 56shall not develop or utilize, directly or indirectly through a contracted entity or other third-party, 57a dollars-per-quality adjusted life year or any similar measures or research in determining 58whether a particular health care treatment is cost effective, recommended, the value of a 59treatment, or in determining coverage, reimbursement, appropriate payment amounts, cost- 60sharing, or incentive policies or programs.