Similar databases based on vital statistics data are found at the state level. Birth defects registries, for example, frequently use vital records data with information on the birth defect as part of their data collection process. For additional information on vital statistics, see chapter 14, Healthcare Statistics.
Clinical Trials A clinical trial is a research project in which new treatments and tests are investigated to determine whether they are safe and effective. The trial proceeds according to a protocol, which is the list of rules and procedures to be followed. Clinical trial databases have been developed to allow physicians and patients to find clinical trials. A patient with cancer or AIDS, for example, might be interested in participating in a clinical trial but not know how to locate one applicable to their type of disease. Clinical trial databases provide the data that enable patients and practitioners to determine what clinical trials are available and applicable to the patient.
The Food and Drug Administration Modernization Act of 1997 mandated that a clinical trial database be developed. The National Library of Medicine (NLM) has developed the database, available on the Internet for use by patients and practitioners. The NLM is a biomedical library that maintains and makes available a vast amount of print collections and produces electronic information resources on a wide range of topics (NLM 2019).
Health Services Research Databases Health services research is research concerning healthcare delivery systems, including organization and delivery and care effectiveness and efficiency. Within the federal government, the organization most involved in health services research is the Agency for Healthcare Research and Quality (AHRQ). AHRQ looks at issues related to the efficiency and effectiveness of the healthcare delivery system, disease protocols, and guidelines for improved disease outcomes.
A major initiative for AHRQ has been the Healthcare Cost and Utilization Project (HCUP). HCUP uses data collected at the state level from either claims data or discharge-abstracted data, including the UHDDS items reported by individual hospitals and, in some cases, by freestanding ambulatory care centers. Which data are reported depends on the individual state. Data may be reported by healthcare organizations to a state agency or to the state hospital association, depending on state regulations. The data then are reported from the state to AHRQ, where they become part of the HCUP databases (AHRQ 2018).
HCUP consists of a set of databases, including the following:
· Nationwide inpatient sample (NIS): inpatient database from a sample of hospitals
· State inpatient database (SID): hospital discharge database
· Nationwide emergency department sample (NEDS): database on emergency departments (EDs)
· State emergency department databases (SEDD): database on hospital emergency departments (EDs)
· Kids inpatient database (KID): database of inpatient discharge data on children (AHRQ 2018)
These databases are unique because they include data on inpatients whose care is paid for by all types of payers, including Medicare, Medicaid, private insurance, self-paying, and uninsured patients. Data elements include demographic information, diagnoses and procedures information, admission and discharge status, payment sources, total charges, length of stay, and information on the hospital or freestanding ambulatory surgery center. Researchers may use these databases to look at issues such as those related to the costs of treating particular diseases, the extent to which treatments are used, and differences in outcomes and cost for alternative treatments.
National Library of Medicine The National Library of Medicine (NLM) produces two databases of special interest to the HIM manager—MEDLINE and UMLS.
Medical Literature, Analysis, and Retrieval System Online (MEDLINE) is the best-known database from the NLM. It includes bibliographic listings for publications in the areas of medicine, dentistry, nursing, pharmacy, allied health, and veterinary medicine. HIM managers use MEDLINE to locate articles on HIM issues as well as articles on medical topics necessary to carry out quality improvement and medical research activities.
The Unified Medical Language System (UMLS) provides a way to integrate biomedical concepts from a variety of sources to show their relationships. This process allows links to be made between different information systems for purposes such as the electronic health record. UMLS is of particular interest to the HIM manager because of medical vocabularies such as ICD-10-CM, CPT, and the Healthcare Common Procedure Coding System (HCPCS).
Health Information Exchange Health information exchange (HIE) initiatives were developed to move toward a longitudinal patient record with complete information about the patient available at the point of care. The data are patient-specific rather than aggregate and are used primarily for patient care. Some researchers have looked at the amount of data available through the HIEs as a possible source of data to aggregate for research. Aggregated data can be deidentified to add another layer of protection for the patient’s identity. (Chapter 12, Healthcare Information, covers HIEs in more detail.)
Data for Performance Measurement The Joint Commission, CMS, and some health plans require healthcare organizations to collect data on core performance measures. Core performance measures are a set of national standardized processes and best practices used to render and improve patient care. These measures are secondary data because they are taken from patients’ health records. Whether a healthcare organization reports such measures will be used as a basis for pay-for-performance systems. The goal is to link performance measures to provider payment (for example, helping the healthcare system move away from paying providers based on quantity to a system based on the quality of care rendered). Therefore, it is extremely important that the data accurately reflect the quality of care provided by the healthcare organization (see chapter 3, Health Information Functions, Purpose, and Users, for more information).
Health information management professionals are often involved in various roles using secondary data. These roles may include gathering information from secondary data sources, analyzing data from the data source, or assisting in maintaining the privacy and security of data sources. Healthcare job titles for individuals working with registries may vary from entity to entity. Most of the registry titles include, but are not limited to, cancer registry specialist, certified tumor registrar, HIM technician birth registry, registry coordinator, manager registry services, or trauma registry coordinator or data analyst. Likewise, many HIM professionals may work with healthcare databases. Those job titles may include, but are not limited to, database manager, database specialist, database administrator, data abstractor, or HIM administrative assistant. As the healthcare environment continues to rely on accurate and reliable information, HIM professionals may find themselves working in the world of healthcare secondary data in new and emerging ways.