Health Economics and Outcomes Research (HEOR) plays a vital role in clinical trials. In addition to years of investigation and examination by the U.S. Food and Drug Administration (FDA) needed to get drug approval, HEOR helps understand how the post-approval impact of interventions functions. In this sense, real-world data (RWD) and real-world evidence (RWE) are a critical part of the process.
At the same time, HEOR aims to deliver a more accurate projection of optimal pricing and adherence to prescription. For this, a vast amount of data sources, big data, and artificial intelligence are used in the United States and the rest of the world to improve predictive analysis. However, these technological advances have yet to be developed even further.
Researchers in HEOR, and other entities involved in the process such as payers, need to use all available information, knowing it doesn’t originate from fragmented or incomplete datasets that don’t reflect patient experience.
The use and evolution of Real-World Data (RWD)
The use of RWD is not limited to healthcare, pharmaceutical companies, and medical specialty societies. Information is everywhere. Regarding healthcare, the most significant advances are happening in clinical research. Still, HEOR has to fully grasp what data can do in this field since it is usually fragmented, incomplete, or geographically constrained.
In order to improve RWD, the collaboration of multiple stakeholders in HEOR is necessary. In addition, many data owners do not allow access to their data from external sources, which complicates the generation of RWE required for new product launches, economic evaluations, new studies, decisions, and cost-effectiveness analyses.
On the other hand, these limitations originate from how the system was developed and created. The reliance on current data collection methods, like electronic medical records and claims data, privacy protection, regulations, and research rules— even if understandable and part of natural development— create challenges. Recent efforts of individuals and organizations show that the industry is currently aware of the much-needed improvement in this sector.
Where does HEOR data come from?
The most common data types used in Health Economics and Outcomes Research can come from several sources, including researchers, governments, administration, and healthcare providers, among many others. Some are listed below:
WHO Global Health Observatory
Data included in the Global Health Observatory of the World Health Organization (WHO) is free to access. The WHO includes insights, publications, disaggregated data across various topics, toolkits, training, and other resources, making it a valuable go-to-data resource.
OECD health statistics
Information from OECD Health Statistics comprises collated data on various critical aspects of OECD countries’ healthcare systems. It includes more than 1,200 indicators on healthcare systems, and data is compiled within their general demographic, economic, and social contexts.
The Centers for Disease Control and Prevention (CDC) offers a wide variety of datasets in the United States. Tools are offered in order to better understand the fundamentals of economic evaluation, costs, the burden of various health problems, and the effectiveness and efficiency of health programs and public health in general.
United States Census Bureau
The United States Census Bureau offers data on health insurance, disability employment, healthcare industries, fertility, social assistance services, disease surveillance, annual and quarterly surveys, and economic census. In addition, access to data tools, tables, interactive maps, and many other statistics are made available.
Statista is a popular platform with access to more than 1.5 million datasets (growing every day), statistics spanning more than 85,000 varying topics, and forecasts for over 400 industries. It does not only include healthcare information. Within each industry listed are sub-industries and their adjacent insights. Statista is updated monthly, quarterly, semiannually, or yearly depending on the dataset’s content. Reports, dossiers, and studies are also available on the platform.
The Eurostat is the official portal for social and economic data about EU member states. The portal is updated regularly with thematic sections, publications, the latest news, euro indicators, and statistics by theme, including visualization tools.
Population Reference Bureau – Population and Health Data
The Population and Health Data from this US-based nonprofit organization contains free to access data on 136 population, health, and environment variables spanning more than 220 countries and 28 world regions.
World Bank Open Data
The World Bank Open Data portal includes datasets, databases, reports, and pre-formatted tables for topics from climate change and poverty to healthcare and women in education. There is a data catalog to search and share and perform refined research.
United Nations (UNData)
The UNdata is maintained by the United Nations Statistics Division (UNSD) of the Department of Economic and Social Affairs (DESA), currently replacing the United Nations Common Database. Its data is a great starting point for tracing specific statistics and statistical indicators.
Respectively, UNData’s sources are WHO health data, the United Nations Educational, Scientific, and Cultural Organization (UNESCO), refugee data from the United Nations High Commissioner for Refugees (UNHCR), and the International Telecommunications Union statistics, among others.
CIA World Factbook
CIA World Factbook‘s data is compiled by the United States Central Intelligence Agency and offers a free source of social and economic data for all countries. It is updated annually and also provides a global ranking of each variable.
The Centers for Medicare & Medicaid Services (CMS) have comprehensive data on research, statistics, and systems, from monitoring programs to health outcomes surveys, drug spending, and economic models.
The International Labour Organization (ILOSTAT) compiles market statistics of more than 100 indicators and 230 countries, dating back to 1952 in some cases. The information is updated annually.
UK Data Service
The UK Data Service provides a vast amount of information from more than 6,000 collections of social and economic data that originate from the European Commission, International Labour Organization, International Monetary Fund (IMF), and World Bank, including UK census data and UK survey data.
OHE Health Statistics and Data Analyses
OHE Health Statistics and Data Analyses offers population health data for the UK. OHE’s research system stimulates discussion and debate regarding issues in health economics and health care policy at the UK, European and international levels. OHE’s four primary research themes are economics of innovation; policy, organization and incentives in health systems; value, affordability, and decision making; and measuring and valuing outcomes. Datasets include population, mortality, morbidity, healthcare expenditure, family health services, and hospital services.
These common datasets used in HEOR are certainly not the only ones, although they provide a comprehensive overview of where data comes from.
RWD and RWE is becoming increasingly important, especially since the rise of artificial intelligence and big data in recent years. However, the field of health economics still has a long way to go to improve value-based care for patients using relevant data.