Save Lives, Advance Equitable Outcomes, and Reduce Healthcare Costs with Better Data

Disparities in healthcare outcomes lead to shorter, less healthy lives and higher systemic healthcare costs. Decades of medical literature have documented that even where affordable health insurance provides access to healthcare, people of color experience different treatment and worse outcomes, including in cardiac care, dialysis and transplants, stroke, cancer, and other serious illnesses. By collecting and assessing demographic data about patients’ health outcomes, states can allow healthcare practitioners to develop and target policy solutions that will improve health outcomes for all.

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Frequently Asked Questions
Who does this help?
This policy helps everyone by improving health outcomes, saving lives and reducing the costs of healthcare. It will particularly benefit communities of color and the LGBTQ+ community.
Is this high cost for the state government?
No. Proactively identifying the communities in which healthcare risks are most prevalent will save money through reduced healthcare costs.
Why is this effective?
Collecting information on health outcomes disaggregated by race, gender, sexual orientation, ethnicity, and primary language allows hospitals, healthcare providers, and policymakers to identify appropriate policy changes to improve outcomes, save lives, and reduce costs.
  • Patients and their families
  • Health justice advocates
  • Healthcare providers
  • None noted
Model Policy
This act shall be known as the Equitable Health Outcomes Act
To establish data collection standards to save lives, promote equitable health care outcomes, and decrease healthcare costs and ensure quality healthcare for all through a Health Outcomes Review Board.

(a) Beginning one year from the effective date of this law, an entity required to collect health data and report it to DEPARTMENT shall include, in the patient data collected, the following information, using the minimum standards for data collection as outlined by the United States Department of Health and Human Services:
-(i) race,
-(ii) ethnicity,
-(iii) sexual orientation,
-(iv) gender identity,
-(v) language, and
-(vi) such other demographic information as DEPARTMENT requires through regulation.
(b) There is hereby established an Health Outcomes Review Board, which shall be tasked with annually reviewing and reporting data on health outcomes, including illnesses, treatments, and cause of death in STATE, disaggregated as outlined in section (a) above and facilitating adoption of solutions that will improve health outcomes in STATE.
(c) The Board shall be composed of a minimum of twenty-one and a maximum of twenty-five members that the highest-ranking state health official (“Health Official”) shall appoint to serve three-year terms. The Health Official shall serve as Chair.
-(i) Members of the Board shall be appointed from geographic areas throughout the state with knowledge of healthcare and social determinants of health including:
–(1)representatives of hospitals, clinics, and group and private medical practices;
–(2) health care providers;
–(3) nursing providers;
–(4) the Commissioner of each STATE Department and Offices with knowledge, data, or relevant jurisdiction over aspects of the healthcare process;
–(5) at least two representatives from communities in STATE most impacted by inequitable health outcomes;
–(6) representatives of an association of healthcare providers; and;
–(7) at least two representatives of non-profit organizations that work in health equity, to be selected by the Governor from a list provided by the legislative representatives;
–(8) other health care professionals and representatives that the Health Official deems appropriate.
-(ii) In appointing members to the Board, the Health Official shall follow best practices as outlined by the Centers for Disease Control and Prevention in the federal Department of Health and Human Services.
-(iii) All initial appointments to the Board shall be made within 60 days after enactment of this act.
-(iv) Board members shall serve without compensation or perquisite arising from their service.
(d) The Health Official shall call the first Board meeting as soon as practicable following the appointment of a majority of Board members, and in no case later than six months after enactment of this Act. Thereafter, the Board shall meet pursuant to a schedule that is established during the first Board meeting, but no less than 4 times per calendar year. The Board may additionally meet at the call of the Chair.
(e) A majority of the total number of members appointed to the Board shall constitute a quorum for the conducting of official Board business. Any recommendations of the Board shall be approved by a majority of the members present.
(f) In addition to any relevant national or publicly available data, the Board shall have access to de-identified data sets collected by the DEPARTMENT.
-(i) The data sets provided by the DEPARTMENT and all activities or communications of the commission shall comply with all state and federal laws relating to the transmission of health information.
-(ii) Such data sets shall contain all relevant information of patients that received care in STATE during the previous calendar year.
-(iii) Such data sets shall have all personally identifying information removed. The information to be redacted from data sets includes, but is not limited to:
–(1) names;
–(2) street address;
–(3) facial photographs;
–(4) phone numbers;
–(5) social security numbers;
–(6) and other personal information not relevant to the diagnosis, treatment, or care provided during a fatal maternity incident.
–(iv) Each member of the Board shall sign a confidentiality agreement regarding personally identifying information that the DEPARTMENT deems necessary to the Board’s objective, or that is disclosed to the Board inadvertently. A Board member who knowingly violates the confidentiality agreement commits a class 3 misdemeanor.
-(v) Members of the Board are not subject to subpoena in any civil, criminal, or administrative proceeding regarding the information presented in or opinions formed as a result of a meeting or communication of the Board; except that this subsection (e)(v) does not prevent a member of the Board from testifying regarding information or opinions obtained independently of the Board or that are public information.
-(vi) Notes, statements, medical records, reports, communications, and memoranda that contains, or may contain, patient information are not subject to subpoena, discovery, or introduction into evidence in any civil, criminal, or administrative proceeding, unless the subpoena is directed to a source that is separate and apart from the commission. Nothing in this section limits or restricts the right to discover or use in a civil, criminal, or administrative proceeding notes, statements, medical records, reports, communications, or memoranda that are available from another source separate and apart from the Board and that arise entirely independent of the Board’s activities.
(g) The Board shall:
-(i) provide clear and effective guidelines on data collection to all healthcare facilities, not limited to hospitals, community health centers, physician and group practices, and insurance programs
-(ii) review illness and death incidents in the state using the de-identified data sets that the DEPARTMENT provides or any other lawful source of relevant information;
-(ii) review research that substantiates the connections between social determinants of health before, during, and after, hospital treatment
-(iii) outline trends and patterns disaggregated by race, ethnicity, and language relating to illness, death, and treatments in STATE;
-(iv) review comprehensive, nationwide data collection on illness, death, and treatments, including data disaggregated by race, ethnicity, and language;
-(v) review any information provided by the DEPARTMENT on social and environmental risk factors for all people and especially people of color;
-(vi) review research to identify best practices and effective interventions for improving the quality and safety of health care and compare those to practices currently in use in STATE;
-(vii) review research to identify best practices and effective interventions in order to address pre-disease pathways of adverse health and compare those to practices currently in use in STATE;
-(viii) review research to identify effective interventions for addressing social determinants of health disparities;
-(ix) serve as a link with equitable health outcomes review teams throughout the country and participate in regional or national review team activities;
-(x) request input and feedback from interested and affected stakeholders; and
-(xi) compile reports, using aggregate data based on the cases that the DEPARTMENT identifies for reporting. The Board shall compile these reports on an annual basis in an effort to further study the causes and problems associated with inequitable health outcomes and shall distribute these reports on DEPARTMENT’s website and to the legislature, government agencies, health care providers and others as necessary to provide equitable health care in the state.
-(xii) Annually produce a report highlighting recommended solutions and steps that could be taken in STATE to reduce inequitable health outcomes, including complications, morbidity, and near-death or life-threatening incidents. These reports shall include recommendations to assist health care providers, relevant DEPARTMENTs and lawmakers in reducing inequitable treatment and health outcomes. The Board shall distribute these reports on the DEPARTMENT’s website and to the legislature, government agencies, health care providers and others as necessary to reduce inequitable health treatments and outcomes in the state.
(h) The Board may:
-(i) form special ad hoc panels to further investigate cases of illness and death resulting from specific causes when the need arises; and
-(ii) perform any other function as resources allow to enhance efforts to reduce and prevent unnecessary death and illness in the state.
(j) Reports prepared by the Board shall detail which recommendations state DEPARTMENTS or others can pursue on their own without additional legislative action. Unless precluded by state or federal law, DEPARTMENTS may begin to enact recommendations immediately and shall issue public replies to Board reports indicating whether recommendations can or will be acted on, or any obstacles faced by DEPARTMENT in acting upon them.
(k) For recommendations that would require additional action by the legislature, the Board report shall include in the report specific requests and outlines of legislative action needed, including budget requests.
(l) DEPARTMENT is authorized to promulgate regulations to achieve the outcomes described in this Act.