Objective 4.4: Improve data collection, use, and evaluation, to increase evidence-based knowledge that leads to better health outcomes, reduced health disparities, and improved social well-being, equity, and economic resilience

HHS invests in strategies to improve data collection, use, and evaluation, to increase evidence-based knowledge that leads to better health outcomes, reduced health disparities, and improved social well-being, equity, and economic resilience.  HHS leverages different types of data, such as administrative data and research data, to guide its actions.  HHS is establishing a Department-wide approach to improve data collection, close data gaps, transform data, and share data for better HHS analysis and evaluation.  HHS also fosters collaborations to expand data access and sharing to create more opportunities to use HHS data to increase knowledge of health, public health, and human service outcomes.  HHS is improving data collection and conducting evaluations to understand the drivers for inequities in health outcomes, social well-being, and economic resilience while working to increase capacity and the use of evaluations at HHS to inform evidence-based decision making.

Objectives represent the changes, outcomes and impact the HHS Strategic Plan is trying to achieve.  This objective is informed by data and evidence, including the information below.

• The HHS Evaluation Policy provides overarching guidance for evaluation practices across the Department and is designed to allow the appropriate flexibility for each HHS Staff Division and Operating Division to determine specific practices best suited for their individual evaluation capacities and needs.  (Source: Department of Health & Human Services Evaluation Policy)
• The HHS Office of Inspector General's 2020 Report included the management, sharing and securing of data as a top challenge for the Department.  The COVID-19 pandemic underscored the need for significant efforts to modernize data practices across HHS.  (Source: 2020 Top Management & Performance Challenges Facing HHS)
• Almost half of all data collected from states on vaccine recipients were missing the race and ethnicity of recipients.  The U.S. Government Accountability Office recommends that HHS take steps to ensure the complete reporting of race and ethnicity from state data.  (Source: Swift, Sustained Action Needed to Improve Federal Response to COVID-19)

Contributing OpDivs and StaffDivs

ACF, ACL, AHRQ, ASPE, CDC, CMS, FDA, HRSA, IHS, NIH, OASH, OCR, OGA, ONC, and SAMHSA work to achieve this objective.

HHS OpDivs and StaffDivs engage and work with a broad range of partners and stakeholders to implement the strategies and achieve this Objective.  They include: the Chief Data Officer Council, Evaluation Officer Council, Development of agreements on trade, mutual recognition, and information exchange, Global Summit on Regulatory Science, HHS Data Council, HHS Evidence and Evaluation Council, Interagency Coordinating Committee on the Validation of Alternative Toxicological Methods, National Voluntary Accreditation for Public Health Departments, and Support Memorandum of Understanding between the FDA and the Government of India.

Strategies

Establish a Department-wide approach to improve data collection, close data gaps, transform data, and share data for better HHS analysis and evaluation

• Fully implement Section 4302 of the Affordable Care Act to ensure that all HHS national data collection efforts and surveys collect information germane to social determinants of health, including data on race, ethnicity, primary language, disability status, sex, sexual orientation, gender identity, and pregnancy.
• Identify and address data gaps, including surveillance systems, surveys, and other data collection methodologies, that limit the ability to fully examine and assess social determinants of health, outcomes, and conditions of populations served by the Department’s health, public health or human services programs or services.
• Design common data elements and taxonomies across the Department to consistently categorize data and information, improve data integrity, and ensure trust in data.
• Invest in and promote intra-agency data sharing, including data linkages, interoperability of data, and data harmonization and standardization to leverage data, metrics, and information to improve analysis and evaluation of the Department programs.
• Broaden the use of artificial intelligence, machine learning, predictive modeling, and other new technologies to harness the power of integrated data that can lead to improved health, public health, and human service outcomes.
• Encourage data sharing across the Department to support the research and development of artificial intelligence solutions that can lead to improved public health outcomes.

Foster collaborations to broadly expand data access and sharing to create more opportunities to use HHS data to increase knowledge of healthcare, public health, and human services outcomes

• Increase data interoperability between federal partners, states, tribes and territorial partners, non-profit organizations, and health information exchange networks to facilitate shared understanding, application, and utility.
• Expand data sharing with state and local health departments, healthcare provider groups, clinical and patient care agencies, consortia developing regional health information exchanges, safety net providers, and other community-based organizations.
• Facilitate data sharing and access to HHS publicly available data by developing platforms and repositories, and maximizing their value by ensuring they are easy to find, user-friendly, and in machine-readable format.
• Partner with academic research institutes to catalogue and provide access to the Department's data inventory that matches what researchers need to investigate health inequity across communities and the policy impacts on those inequities.
• Foster U.S. and international collaborations to broadly expand data access and sharing to create more opportunities to use HHS data to increase knowledge of health, public health, and human service outcomes.
• Develop a nationally representative all payer claims database that can be used by providers, consumers, researchers, and policymakers to develop new evidence on the impact of specific types of care on access to care, quality of care and the costs of care for different population subgroups.
• Collaborate and coordinate across HHS Divisions and with other federal departments, states, tribal health facilities, Urban Indian Organizations, and others to improve American Indian/Alaska Native healthcare and status data collection to identify and share best practices to enhance the quality and quantity of American Indian/Alaska Native federal health information system data, including the expansion of social well-being, equity, economic resilience, and population comparison data.

Improve data collection and conduct evaluations to understand the drivers for inequities in health outcomes, social well-being, and economic resilience

• Better engage and include community stakeholders and those with lived experience into the policymaking, program improvement, and research processes.
• Integrate social determinants of health data into surveillance systems, electronic health records, clinical decision supports, and other data collection points to improve knowledge and ensure equitable access to quality care and service delivery.
• Ensure HHS-funded projects and research studies assess disparities in outcomes in the use of health or human services, including social determinants of health and while protecting personally identifiable information.
• Support expanded research in various settings and among federal agencies to establish the evidence base for community and system level social determinants of health interventions to achieve health equity for historically underserved communities.
• Evaluate healthcare utilization, screening, treatment, and survivorship to identify disparities in health outcomes of individuals belonging to multiple underserved groups to inform program improvement and policy development.

Strengthen capacity and the use of evaluations at HHS to inform evidence-based decision making

• Engage in a systematic approach towards building capacity for evaluation and related analyses to ensure the Department is supporting programs that effectively improve the health and well-being of those it serves.
• Publish an Evidence Building Plan and Annual Evaluation Plans that focus Departmental evidence-building activities and organizational learning, and promote transparency encouraging external stakeholders to build evidence useful for Agency decision-making.

Performance Goals

The HHS Annual Performance Plan provides information on the Department’s measures of progress towards achieving the goals and objectives described in the HHS Strategic Plan for FY 2022–2026.  Below are the related performance measures for this Objective.

• Sustain the percentage of Federal Power Users (key federal officials involved in health and healthcare policy or programs) that indicate that data quality is good or excellent
• Number and percentage of Maternal, Infant, and Early Childhood persist Program grantees that meet benchmark area data requirements for demonstrating improvement

Learn More About HHS Work in this Objective

• Assessing Donor Variability And New Concepts in Eligibility (ADVANCE): The study will provide data to assess if specific questions may be able to determine individual risk regarding men who have sex with men (MSM).
• Cancer Trends Progress Report: The Cancer Trends Progress Report summarizes our nation's advances against cancer in relation to Healthy People targets set forth by the Department of Health and Human Services.  The report includes key measures of progress along the cancer control continuum and uses national trend data to illustrate where improvements have been made.
• CDER Patient Focused Drug Development: Patient-focused drug development (PFDD) is a systematic approach to help ensure that patients’ experiences, perspectives, needs, and priorities are captured and meaningfully incorporated into drug development and evaluation.  As experts in what it is like to live with their condition, patients are uniquely positioned to inform the understanding of the therapeutic context for drug development and evaluation.  The Patient-Focused Drug Development Program Staff leads initiatives and provides strategic, regulatory, program, and policy assistance within the Center for Drug Evaluation and Research (CDER) to facilitate the incorporation of patient input into decision-making.
• CBER Center for Biologics Evaluation and Research Patient Engagement Program: CBER interacts with patient groups on Center-specific topics and actively engages in Agency programs, initiatives, and events to gather patient input and share best practices for involving patients in medical product development and regulation.  CBER’s patient engagement program collaborates closely with the Center for Drug Evaluation and Research (CDER), the Center for Devices and Radiological Health (CDRH), the Office of the Commissioner and other FDA offices and programs to coordinate patient engagement activities and patient-focused medical product development efforts, and to share best practices.
• Data Linkage: The NCHS Division of Analysis and Epidemiology (DAE) has developed a record linkage program designed to maximize the scientific value of the Center’s population-based surveys.  Linked data files enable researchers to examine the factors that influence disability, chronic disease, healthcare utilization, morbidity, and mortality.
• Health Equity Data Access Program: The Health Equity Data Access Program supports three “seats” in the CMS Virtual Research Data Center to assist researchers in gaining access to CMS restricted data for minority health research.  Awardees gain access to CMS data to conduct health services research focusing on underserved populations, including race, ethnicity, language, sexual orientation, gender identity, and disability status.
• Health, United States Annual Report: Health, United States reports on the health status of the nation, bringing together national trends in health status and determinants, healthcare utilization, healthcare resources, and health expenditures and payers from a variety of government and non-government sources.  Statistics are presented for the total population as well as by population characteristics germane to social determinants of health.
• Mapping Medicare Disparities interactive online tool: Available on the CMS OMH website, the Mapping Medicare Disparities (MMD) Tool is an interactive map that can be used by anyone interested in exploring geographic areas of health disparities between subgroups of Medicare beneficiaries.
• Medicare Bayesian Improved Surname Geocoding (MBISG) Algorithm: CMS OMH is working on an improved imputation algorithm titled the Medicare Bayesian Improved Surname Geocoding (MBISG), to improve the accuracy of identifying racial and ethnic minority groups when these data are missing.
• Medical Expenditure Panel Survey (MEPS): MEPS is a set of large-scale surveys of families and individuals, their medical providers, and employers across the United States.  MEPS is the most complete source of data on the cost and use of healthcare and health insurance coverage.
• Medical Expenditure Panel Survey (MEPS): Experiences with Cancer Survivorship Supplement.  The MEPS Experience with Cancer Survivorship Supplement includes data to help understand the burden of cancer, its treatment and impact on access to health care, the ability to work and participate in usual activities, health insurance, and quality of care.
• Medicare Evidence Development & Coverage Advisory Committee (MEDCAC): The Medicare Evidence Development & Coverage Advisory Committee (MEDCAC) was established to provide independent guidance and expert advice to CMS on specific clinical topics. The MEDCAC is used to supplement CMS' internal expertise and to allow an unbiased and current deliberation of "state of the art" technology and science.  The MEDCAC reviews and evaluates medical literature, reviews technology assessments, public testimony and examines data and information on the benefits, harms, and appropriateness of medical items and services that are covered under Medicare or that may be eligible for coverage under Medicare. The MEDCAC judges the strength of the available evidence and makes recommendations to CMS based on that evidence.
• National Healthcare Quality and Disparities Report presents trends for measures related to access to care, affordable care, care coordination, effective treatment, healthy living, patient safety, and person-centered care.  The report presents, in chart form, the latest available findings on quality of and access to healthcare, as well as disparities related to race and ethnicity, income, and other social determinants of health.
• Minority Research Grant Program: CMS OMH’s Minority Research Grant Program (MRGP) supports researchers at minority-serving institutions (MSIs) that are exploring how CMS can better meet the healthcare needs of underserved populations.
• Morbidity and Mortality Weekly Report (MMWR): The Morbidity and Mortality Weekly Report (MMWR) series is prepared by the CDC.  Often called “the voice of CDC,” the MMWR series is the agency’s primary vehicle for scientific publication of timely, reliable, authoritative, accurate, objective, and useful public health information and recommendations.
• National COVID Cohort Collaborative (N3C): N3C is building a centralized national data resource—the NCATS N3C Data Enclave—that the research community can use to study COVID-19 and identify potential treatments as the pandemic continues to evolve.  Specifically, the N3C will enable the rapid collection and analysis of clinical, laboratory and diagnostic data from hospitals and healthcare plans.
• National Evaluation System for Health Technology: The National Evaluation System for health Technology (NEST) generates more high-quality and comprehensive evidence for medical device evaluation and regulatory decision-making across the total product lifecycle.
• National Health Interview Survey (NHIS): The National Health Interview Survey (NHIS) monitors the health of the nation.  NHIS data on a broad range of health topics are collected through personal household interviews.  Survey results have been instrumental in providing data to track health status, healthcare access, and progress toward achieving national health objectives.
• National Health and Nutrition Examination Survey (NHANES): A program of studies designed to assess the health and nutritional status of adults and children in the United States.  The survey is unique in that it combines interviews and physical examinations.  NHANES is a major program of the National Center for Health Statistics (NCHS).  Findings from this survey will be used to determine the prevalence of major diseases and risk factors for diseases.  Information will be used to assess nutritional status and its association with health promotion and disease prevention.
• National Voluntary Accreditation of Public Health Departments: CDC’s Center for State, Tribal, Local, and Territorial Support (CSTLTS) provides support to the Public Health Accreditation Board (PHAB) for its accreditation and continuous improvement activities through a cooperative agreement.  CDC also provides in-kind staff time and technical expertise to develop and continuously improve accreditation by contributing to PHAB workgroups and committees and by engaging subject matter experts and programs across CDC.
• OS-Patient Centered Outcomes Research Trust Fund (OS-PCORTF): Patient-centered outcomes research is designed to produce new scientific evidence that informs and supports the healthcare decisions of patients, families, and their healthcare providers.  PCOR studies focus on the effectiveness of prevention and treatment options with consideration of the preferences, values, and questions patients face when making healthcare choices.  The validity of PCOR findings is strengthened by a robust data infrastructure within HHS agencies that supports rigorous analyses and generates relevant findings that help inform decisions.
• Patient Science and Engagement: The Patient Science and Engagement Program is inspired by patients and driven by science with the overarching goal to understand the patients’ perspectives and proactively incorporate it into all our decisions and regulatory activities where appropriate.  Our program fosters (1) consistent regulatory review, (2) a culture of patient engagement, and (3) optimization of the research roadmap.
• Racial, Ethnic, and Gender Disparities in Medicare Advantage stratified report: The Racial, Ethnic, and Gender Disparities in Healthcare in Medicare Advantage stratified report highlights racial and ethnic differences in healthcare experiences and clinical care, compares quality of care for women and men, and looks at racial and ethnic differences in quality of care among women and men separately for Medicare Advantage plans.
• RePORTER: The NIH has integrated the highest level of public accountability into its scientific mission through access to its research data.  To that end, the Research Portfolio Online Reporting Tools provide access to reports, data, and analyses of NIH research activities, including information on NIH expenditures and the results of NIH-supported research.
• Social Determinants of Health Z Codes: Increasing uptake of International Classification of Diseases 10th edition, Clinical Modification (ICD-10-CM) Z codes for capturing Social Determinants of Health data.  Z codes are a tool for identifying a range of issues related – but not limited – to education and literacy, employment, housing, ability to obtain adequate amounts of food or safe drinking water, and occupational exposure to toxic agents, dust, or radiation. Z codes can be used in any health setting (e.g., doctor’s office, hospital, skilled nursing facility (SNF) and by any provider (e.g., physician, nurse practitioner).
• Transformed Medicaid Statistical Information System Data Analysis: Currently undergoing redesign, the CMCS Transformed Medicaid Statistical Information System (T-MSIS) is a critical data and systems component of the CMS Medicaid and Children's Health Insurance Program Business Information Solution used to collect utilization and claims data, as well as other key program information, to keep pace with the data needed to improve beneficiary quality of care and assess beneficiary access to care and enrollment among underserved populations.
• U.S. Department of Health and Human Services FY 2022 Evaluation Plan: As part of the Evidence Act, HHS is required to submit “an evaluation plan describing activities the agency plans to conduct pursuant to [its evidence-building plan].” Nine operating divisions within HHS and one staff division developed evaluation plans and included information on priority questions being examined by the agencies as well as data, methods, and challenges to addressing those questions.