Health Information Management Technology: An Applied Approach 4th Edition AHIMA Chapter 8 Secondary Data Sources

EHR health record data entered once and used many times such as: (EHR is a database)
research, improvement in patient care, reported to the state and become part of state and federal level databases used to set health policy and improve healthcare
HIM professional roles in managing secondary record and databases include:
determining the content of the database and ensuring compliance with the laws, regulations and accreditation standards that affect its content and use.
All data elements included in the database or registry must be defined in a:
data dictionary
The HIM professional may serve as a __________ to oversee the completeness and accuracy of the data abstracted for inclusion in the database or registry
data steward
The health record is considered a __________ data source because it contains information about a patient that has been documented by the professionals who provided care or service to that patient
Primary Data Source
Data contained in registries and similar databases are considered a _______________ data source.
Secondary data source
Other classifications of data
patient-specific/identified data
patient identifiable data, or aggregate data
What is patient identified data?
where the patient is identified within the data. (health record, registries)
data on groups of people or patients without identifying any particular patient individually.
aggregate data
4 major purposes for secondary data
-Quality, performance and safety
CMS measures information from health records to evaluate the quality of care within the facility
– Research – data entered into disease oriented databases help to determine the effectiveness of a treatment method and can quickly demonstrate survival rates at different stages
– Population health – states require that information be reported to them on certain diseases so that the extent of the disease can be determined and measures to prevent its spread can be initiated.
– Administration – Used for credentialing physicians, for malpractice or other adverse decisions against a physician
A user of secondary data that are individuals located within the healthcare facility
Internal Users of secondary data
A user of secondary data that are individuals and institutions outside the facility
External Users of secondary data, state data banks and federal agencies – generally use aggregate data and not patient identifiable data.
Bob Smith is a 56 year old white male. This is an example of what type of data?
Patient specific
Which of following is an example of how an internal user utilizes secondary data?
Benchmarking with other facilities
Secondary data is used for multiple reasons including:
Assisting researchers in determining effectiveness of treatments
True or False: A registry is a secondary data source
True or False: A patient health record contains aggregate data
True or False: Administrative and management staff members are internal users of secondary data
True or False: Medical staff members are external users of secondary data
Secondary data sources consist of facility-specific indexes: such as:
registries, either facility or population based; or other healthcare databases
The most long standing secondary source are those that have been developed within facilities to meet their individual needs and are called;
Facility specific Indexes – and provide indexes to enable health records to be located by diagnosis, procedure, or physician
MPI contains patient-identifiable data
names, address, date of birth, dates of hospitalizations or encounters, name of attending physician and health record number. Great source for locating the patient record number.
A listing in diagnosis code number order of patients discharged from the facility during a particular time period.
disease index and is considered patient identifiable data as it contains the patient’s record number and can be linked directly.
A listing in numerical order by the patient’s procedure code(s) using the International Classification of Diseases or Current Procedural Terminology (CPT) codes.
Operation index and is considered patient identifiable data.
A listing of cases in order by physician
physician index and is patient identifiable data
Collections of secondary data related to patients with a specific diagnosis, condition, or procedure.
Disease registry – contain more extensive data than indexes. Each registry must define the cases that are to be included in it.
Case definition
A registry defining the cases that will be included in the database.
Case finding
method used to identify the patients who have been seen and/or treated in the facility for the particular disease or condition of interest to the registry. Some registries collect data from health records to make them available to users
Cancer registries: Facility based
provide information for the improved understanding of cancer, including its causes and methods of diagnosis and treatment. Can provide comparisons in the survival rate with a specific treatment
Cancer registries: Population Based (from more than one facility
emphasis is on identifying trends and changes in the incidence (new cases) of cancer within the area covered by the registry
Cancer Registries Amendment Act of 1992 provided funding for a national program of cancer registries with population based registries in each state and mandated to collect data such as:
– Demographic info about each case of cancer
-Info on the industrial or occupational history of the individuals with the cancers (to the extent such info is available from the same record
– Administrative info including date of diagnosis and source of info
– Pathological data characterizing the cancer, including site, stage of the neoplasm, incidence, and type of treatment
NPCR – National Program of Cancer Registries state registries
developed as a result of Cancer Registries Amendment Act of 1992 – collects population based data – CDC has national standards regarding the completeness, timeliness, and quality of cancer registry data from state registries through the NPCR. CDC collects data from the NPCR state registries
Cancer registries – population based
usually depend on hospitals, physician offices, radiation facilities, ambulatory surgery centers (ASC), and pathology laboratories to identify and report cases to the central registry
Accession number and Accession registry
number assigned when a case is first entered into the cancer registry and a registry of all cases in accession number order provides a way to ensure that all cases have been entered into the registry.
In addition to demographic information, what other data might it include in the cancer registry? (4)
-Type and site of the cancer
– Diagnostic methodologies
– Treatment methodologies
– Stage at the time of diagnosis
Collaborative Stage Data Set
The American Joint Committee on Cancer (AJCC) has worked through its Collaborative Stage Task Force with other organizations with staging systems to develop a new standardized staging system.
Reporting and Followup for cancer registry data
Formal reporting of cancer registry data is done through an annual report.
Education and Certification for Cancer Registrars
NCRA – National Cancer Registrars Assoc has worked with colleges to develop formal edu prog for cancer registrars. Certified Tumor Registrar(CTR) bypassing an examination provided by the National Board for Certification of Registrars (NBCR). Eligibility includes combination of edu and experience
Abstracted data for trauma registries include:
-Demographic info on the patient
-Info on the injury
– Care the patient received before hospitalization (care at another hospital, emts)
– Status of the patient at the time of admission
– Patient’s course in the hospital
– Diagnosis and procedure codes
-Abbreviated Injury Scale (AIS)
– Injury Severity Score (ISS)
The Safe Medical Devices Act of 1990 and amended in 1992
require a sample of facilities to report death and severe complications thought to be due to a device to the manufacturer and the Food and Drug Administration through its MedWatch reporting system.
MedWatch Reporting System
alerts health professionals and the public of safety alerts and medical device recalls.
The FDA requires that all reportable events involving medical devices include the following information
-User facility report number
-Name and address of the device mfg
– Device brand name and common name
– Product model, catalog, serial, and lot numbers
– Brief description of the event reported to the manufacturer and/or the FDA
– Where the report was submitted (to FDA, manufacturer, or distributor)
Only gastroenterology registry sponsored by the CMS enabling practices to directly submit data for the CMS Physician Quality Reporting System.
American Gastroenterological Association Digestive Health Outcomes Registry
Registries developed for admin purposes
National Provider Identifier Registry and enables users to search for a provider’s national provider identification number.
HIPPA mandated the collection of info on healthcare fraud and abuse because there was no central place to obtain this info.
national Healthcare Integrity and Protection Data Bank (HIPDB) was developed
the area of healthcare dealing with the health of populations in geographic areas such as states or counties.
Public Health – National Center for Health Statistics has resposibility for these databases
CDC developed the National Electronic Disease Surveillance System (NEDSS) that serves as a major part of the Public Health Info Network (PHIN)
provides a national surveillance system by connecting the CDC with local and state public health partners to monitor trends from disease reporting at the local and state levels to look for possible bioterrorism incidents
collection of vital statistics rests with:
the states
research project in which new treatments and tests are investigated to determine whether they are safe and effective
clinical trial – proceed according to protocols (lists of rules and procedures to be followed)
FDA Modernization Act of 1997 mandated that a clinical trials database be developed – it is called:
National Library of Medicine has developed the database which is available online for use by both patients and practitioners
4 study phases of a clinical trail
Phase 1 studies research the safety of the treatment in a small group of people.
Phase 2 studies, emphasis is on determining the treatment’s effectiveness and further investigating safety.
Phase III studies look at effectiveness and side effects and make comparisons to other available treatments in larger populations.
Phase IV studies look at the treatment after it has entered the market.
research concerning healthcare delivery systems, including organization and delivery and care effectiveness and efficiency. Within the federal gov who is the org most involved in health services research?
Health services research; Agency for Healthcare Research and Quality (AHRQ) who’s major initiative has been the Healthcare Cost and Utilization Project (HCUP)
The National Library of Medicine (NLM) produces two databases of special interest to the HIM manager:
MEDLINE Medical Literature, Analysis, and Retrieval System Online
best known database from the NLM and includes bibliographic listings for publications in the areas of medicine, dentistry, nursing, pharmacy, allied health, and veterinary medicine. HIM mgrs use MEDLINE to locate articles on improvement and medical research activities.
UMLS – Unified Medical Language System
provides a way to integrate biomedical concepts from a variety of sources to show their relationships. process allows links to be made between different info systems for purposes such as electronic health record systems. Specific interest to HIM mgr is medical vocabularies such as the ICD-9-CM, CPT, and the HCPCS are among the items included.
HIE – Health Information Exchange
initiatives have been developed to move toward a longitudinal patient record with complete information about the patient available at the point of care. Patient specific info rather than aggregate data used primarily for patient care
The Joint Commission, CMS and some health plans require healthcare facilities to collect data on core performance measures
secondary data taken from patient medical records
Which index is an important source of patient health record numbers?
Master Patient Index (MPI)
After the types of cases to be included in a registry have been determined, what is the next step in data acquisition?
Case finding
What number is assigned to when it is first entered in a cancer registry?
Accession number
What are the patient data such as name, age, address, and so on called?
Demographic data
What type of registry maintains a database on patients injured by an external physical force
Trauma registry
Why is the MEDPAR File limited in terms of being used for research purposes?
It only contains Medicare patients
Which of the following acts mandated establishment of the National Practitioner Data Bank
Healthcare Quality Improvement Act 1986
I started work today on a clinical trial. I need to familiarize myself with the rules and procedures to be followed. This info is called the:
An advantage of HCUP is that it:
Contains data on all payer types
Issues surrounding the processing and maintenance of secondary databases
-manual versus automated methods of data collection
-Vendor systems versus facility-specific systems
-Data stewardship issues associated w/secondary data collection and use
– data quality issues
-Accuracy, consistency, comprehensiveness, timeliness and confidentiality of the data
a responsibility guided by principles and practices, to ensure the knowledgeable and appropriate use of data derived from individual’s personal health information and encompasses the concepts of data quality, security, confidentiality, and uniformity.
data stewardship
What factors are addressed when assessing data Quality
-data accuracy
– data consistency
– data completeness
-data timeliness
What is data accuracy often referred to as
data validity means that the data is correct
What methods may be used to ensure validity (accuracy)
-incorporate edits in the database (check on the accuracy of the data)
– field comparisons (ie prostrate cancer with Male)
What is data consistency often referred to as;
data reliability – complete data checks by having two people abstract data then compare the two results to identify discrepancies – called interrater reliability method of checking
Comprehensiveness aka completeness
to avoid missing data, the database can be set so that if one field is not answered they cannot go to the next.
Data timeliness
healthcare data should be up to date.
Data confidentiality
usually refers to efforts to guarantee the privacy of personal health information
HIPPA regulations for privacy regarding registries
For HIPPA covered entities, the data collection done by registries is considered part of “healthcare operations”. Therefore the patient does not have to sign an authorization for release of protected health information (PHI) to be included in the registry.
No ROI from patient required for:
-entry into a registry
– reporting notifiable diseases to the state
– data released to internal users, such as physicians for research
-External such as American College of Surgeons collect aggregate data
Notice of Privacy Practices
Info about patients that may be included in registries or other secondary data sources and reported to outside entities must be included in the facility’s Notice of Privacy Practices given to patients on their initial encounters
Entities not covered by HIPAA
Not all registries and databases are covered under HIPAA if the organization maintaining them does not bill for patient care services. Central registries would be an example. In such cases, the general norms for data confidentiality should be followed.
How do you ensure data definitions and standards are uniform
A data dictionary in which asll data elements are defined helps ensure that uniform data definitions are being followed.
Who owns the data both primary and secondary?
In the past, with the primary data source – the patient health record – the consensus was that the facility owned the patient record while the patient controlled its use. This consensus has broken down with extensive use of data from the primary data source in secondary data banks that were unknown to patients, much less under their control.
Who owns the data both primary and secondary
Emphasis has switched to the rights of stakeholders regarding access, use and control of both primary and secondary data
Who is a stakeholder
some who is affected by an issue. Main stakeholders are patients and providers, also including research and governments.
Patients rights to data
Patients must be informed that they do not have exclusive ownership of their information but have the right to know what is collected about them and what uses are made of the data.
Providers must be aware that patients have rights regarding their patient records to access what is collected about them as well as to amend or correct erroneous info.
Patients have a limited right to determine who has access to their primary data – limited by laws and regulations allowing access to data by governments, researchers and other legitimate users of the data.
Using uniform terminology is a way to improve
Data reliability
True or False: HIM professionals have worked with many data stewardship issues for years.
What is used to check the quality of data entered into an information system?
True or False: Now that registries and databases are almost universally electronic, data collection is done manually
True or False: One advantage to a vendor system is that purchasers can find out about the system’s performance from other users
True or False: With regard to data quality, validity refers to the consistency of the data
True or false: Among the HIM professional’s traditional roles is that of maintaining the confidentiality of health data

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