HIMT Ch08
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This document discusses secondary data sources and databases used in healthcare. It provides examples of common secondary data sources like cancer registries, trauma registries, birth defects registries, diabetes registries, and immunization registries. For each type of registry, it describes the purpose, case definition, data collection elements, reporting and follow up processes, applicable standards and regulations. Common roles involved in managing secondary data sources and examples of internal and external users are also summarized.
HIMT Ch08
- 1. © 2013 Chapter 8: Secondary Data Sources Health Information Management Technology: An Applied Approach Fourth Edition
- 2. © 2013 Introduction • Use databases to see trends • Facility-specific registry • Population-based registry
- 3. © 2013 Roles in Managing Secondary Records and Databases • Establishing database o Determining content of database o Compliance with laws, regulations, and accreditation standards o Data dictionary o Data steward
- 4. © 2013 Differences Between Primary and Secondary Data Sources and Databases • Primary data source • Secondary data source • Ways to classify data o Patient-specific/identified data o Patient identifiable data o Aggregate data • Secondary data are usually aggregate data.
- 5. © 2013 Purposes and Users of Secondary Data Sources • Four major purposes o Quality, performance, and patient safety o Research o Population health o Administration
- 6. © 2013 Internal Users • Users within the organization • Examples: o Medical staff o Management staff
- 7. © 2013 External users • Individuals and institutions outside the facility • Examples o State data banks o Federal agencies
- 8. © 2013 Types of Secondary Data Sources • Facility-specific indexes o Master population/patient o Disease o Operation o Physician
- 9. © 2013 MPI • Used to retrieve health information for specific patient • Contains o Name o Address o Date of birth o Dates of hospitalization or encounters o Name of attending physician o Health record number
- 10. © 2013 Disease and Operation Index • Disease o Listing in diagnosis code number order • Patients discharged during specified period • Contains o Health record number o Diagnosis codes o Attending physicians name o Date of discharge
- 11. © 2013 Disease and Operation Index • Operation o Similar to disease index o Numerical order by procedure code o May also include surgeon’s name 11
- 12. © 2013 Physician Index • Listing of cares in order by physician name or number
- 13. © 2013 Registries • Disease registries o Secondary data related to patients with specific diagnosis, condition or procedure o Contain more information than index o Case definition o Case finding
- 14. © 2013 Cancer Registries • Facility-based o Provide information for improved understanding of cancer • Population-based registries o Identifying trends and changes in the incidence of cases
- 15. © 2013 Cancer Registries Amendment Act of 1992 • Mandated population-based registries in each state • Data to be collected include: o Demographic data o Industrial or occupational history o Administrative information including date of diagnosis and source of information o Pathological data including site, stage incidence, and type of treatment
- 16. © 2013 Case Definition and Case Finding in the Cancer Registry • Case definition o Define cases to be entered in registry o Example: All cancers except skin • Case findings o Identify cases that meet case definition o Examples: • Discharge process • Disease indexes • Pathology reports • Radiation therapy or other cancer treatment
- 17. © 2013 Case Definition and Case Finding in the Cancer Registry • Population-based registries rely on hospitals, physician offices, and other healthcare facilities to identify cases
- 18. © 2013 Data Collection for the Cancer Registry • Accession number o Made up of year and sequential number • Accession registry • Demographic information • Information on cancer o Type and site of the cancer o Diagnostic methodologies o Treatment methodologies o Stage at time of diagnosis
- 19. © 2013 Staging • Size and extent of spread of tumor • Staging system developed by American Joint Committee on Cancer • Collaborative Stage Data o Population-based registry • Usually collects information at time of diagnosis • Occasionally receives follow-up information
- 20. © 2013 Reporting and Follow-up for Cancer Registry Data • Annual report o Aggregate data on number of cases in past year by site and type of cancer • Data used in quality assessment and research • Patient follow-up o Obtain information on each patient in registry
- 21. © 2013 Follow-up Methods • Hospital records • Physician • Contacting patients/relatives • Newspaper obituaries • Social Security Death Index • Online phone books
- 22. © 2013 Reporting and Follow-up for Cancer Registry Data • Population-based registry o Usually does not collect follow-up data
- 23. © 2013 Standards and Approval Processes for Cancer Registries • American College of Surgeons Commission on Cancer o Requires cancer registry o Cancer Program Standards • North American Association of Central Cancer Registries o State population registries
- 24. © 2013 Standards and Approval Processes for Cancer Registries • Centers for Disease Control and Prevention o National Program on Cancer Registries • National standards on completeness, timeliness, and quality of cancer registries in state registries
- 25. © 2013 Education and Certification for Cancer Registries • National Cancer Registrars Association o Standards for formal education programs • Certified Tumor Registrar (CTR)
- 26. © 2013 Trauma Registries • Traumatic injuries • Data used for performance improvement and research • Case definition and case finding for trauma registries o Usually involves trauma diagnosis codes
- 27. © 2013 Data Collection for Trauma Registries • Data elements may include: o Demographics o Information on injury o Care received before hospitalization o Status of patient at time of admission o Patient’s course in the hospital o Diagnosis and procedure codes o Abbreviated Injury Scale o Injury Severity Scale
- 28. © 2013 Reporting and Follow-up for Trauma Registries • Reporting varies by registries o Annual report o Performance improvement process o National trauma data bank • May or may not perform follow-up o Focus is quality of life
- 29. © 2013 Standards and Approval Process for Trauma Registries • American College of Surgeons • Trauma registry required for level I trauma center
- 30. © 2013 Education and Approval Process of Trauma Registrars • May be: o Registered Health Information Technician o Registered Health Information Administrator o Registered Nurse o Licensed Practice Nurse o Emergency Medical Technician • Training is workshops and on the job training • Certified Specialist in Trauma Registry (CSTR)
- 31. © 2013 Birth Defects Registries • Collect information on newborns with birth defects • Usually population based • Provide information on incidence of birth defects and monitor trends • Case definition o Varies by facility o May be limited to those found in first year of life
- 32. © 2013 Birth Defects Registries • Detected by o Disease indexes o Labor and delivery logs o Pathology reports o Autopsy reports o Ultrasound reports o Cytogenetic reports o Vital records
- 33. © 2013 Data Collection for Birth Defects Registries • Demographic information • Diagnosis codes • Birth weight • Status at birth (liveborn) • Autopsy • Cytogenetics results • Single or multiple birth • Mother’s use of alcohol, tobacco, or illicit drugs • Father’s use of drugs and alcohol • Family history of birth defects
- 34. © 2013 Diabetes Registries • Used in managing care and research • Case definition o May be limited by type of diabetes • Case findings o Diagnosis codes o Billing data o Medication lists o Physician identification o Health plans
- 35. © 2013 Diabetes Registries • May be found in hospital or physician office • Data collection o Demographic information o Laboratory values o May track patients • Reporting and follow-up o Laboratory monitoring o Patient’s not seen in a year
- 36. © 2013 Diabetes Registries • Population-based registries o Incidence • Purpose of follow-up is to prevent complications
- 37. © 2013 Implant Registry • Tracks performance of implants • Safe Medical Devices Act of 1990 • Medical Device Amendments of 1992 • Must report deaths and severe complications • Case definition o May be all implants or a specified type
- 38. © 2013 Implant Registry Data Collection • User facility report number • Name and address of device manufacturer • Device brand name and common name • Product model, catalog, serial, and lot numbers • Brief description of the event reported to manufacturer and/or the FDA • Where report was submitted
- 39. © 2013 Reporting and Follow-up for Implant Registries • Reporting to FDA and manufacturer • Follow-up used to track performance of implant • If patients are tracked, they can be notified of o Product failures o Recalls o Upgrades
- 40. © 2013 Transplant Registry • May track who needs organ o United Network for Organ Sharing o National Marrow Donor Program • Data may be used for o Research o Policy analysis o Quality control
- 41. © 2013 Transplant Registry • Case definition and case finding for transplant registries o Patients who need transplants • Data collection for transplant registries o Type of data varies
- 42. © 2013 Pretransplant Data • Demographic data • Diagnosis • Status codes regarding medical urgency • Functional status • If patient is on life support • Previous transplants • Histocompatibility
- 43. © 2013 Information on Donor - Death • Cause and circumstance of death • Organ procurement and consent process • Medications the donor was taking • Other donor history
- 44. © 2013 Information on Donor - Living • Relationship to donor to recipient (if any) • Clinical information • Information on organ recovery • Histocompatibility
- 45. © 2013 Reporting and Follow-up for Transplant Registries • Reporting o Information on donors and recipients o Survival rates o Length of time on waiting list
- 46. © 2013 Reporting and Follow-up for Transplant Registries • Follow-up o Collected on donor and living donors o Status on follow-up o Functional status o Graft status o Treatment 46
- 47. © 2013 Immunization Registries • Purpose is to increase number of infants and children to receive required immunizations at the proper intervals • Case definition o All children in population area • Case finding o Frequently entered in registry at birth
- 48. © 2013 Data Collection for Immunization Registries • Patient name • Birth data • Sex, race, ethnicity • Birth order • Birth state/country • Mother’s name • Vaccine type • Vaccination date • Vaccine lot number
- 49. © 2013 Reporting and Follow-up for Immunization Registries • Reporting o Immunization rates • Follow-up o Reminding parents that it is time for immunization o Autodialing systems
- 50. © 2013 Standards and Approval Processes for Immunization Registrations • CDC’s National Immunization Program funds some population based immunization registries • Functional standards include: o Establish registry record within 6 weeks of birth o Protecting confidentiality o Official immunization records
- 51. © 2013 Other Registries • May be developed for any disease or condition o Cardiovascular diseases o Gastroenterology conditions • Administrative registries may be created o National Provider Identifier Registry
- 52. © 2013 Healthcare Databases • National and state administrative databases o Medicare Provider Analysis and Review • Acute care hospital and skilled nursing facility claims data • Medicare patients • Data o Demographic data o Data on provider o Information on Medicare coverage o Total charges o Charges by service o ICD-9-CM diagnosis and procedure codes o MS-DRGs
- 53. © 2013 National Practitioner Data Bank • Database of medical malpractice payments, adverse licensure actions and certain professional review actions • Required reporting o Information on practitioner o The reporting entity • Penalties for nonreporting • Data used in credentialing process
- 54. © 2013 Healthcare Integrity and Protection Data Bank • Mandated by HIPAA to report healthcare fraud and abuse • Final adverse actions are reported o Federal or state licensing and certification actions o Exclusions from participation in federal or state healthcare programs o Any other adjudicated actions or decisions defined in the HIPDB regulations
- 55. © 2013 Healthcare Integrity and Protection Data Bank • Data reported o Information on provider, supplier, or practitioner o Nature of the act o Description of actions on which the decision is based
- 56. © 2013 State Administrative Data Bank • Administrative databases used by state o May include UHDDS or ASC X12N 837 data
- 57. © 2013 National, State, and County Public Health Databases • Public health o Surveillance of health state of population o Monitors • incidence and prevalence of disease • Possible high-risk populations • Survival statistics • Trends over time o Data collected by interview, physical exams, and health records
- 58. © 2013 National Health Care Survey • Public health survey • Made up of multiple surveys o National Hospital Discharge Survey o National Ambulatory Medical Care Survey o National Survey of Ambulatory Care o National Nursing Home Survey o National Home and Hospice Care Survey • Uses health record data
- 59. © 2013 Other Public Health Databases • National Electronic Disease Surveillance • National Hospital Care Survey • National Immunization Survey • State and local databases
- 60. © 2013 Vital Statistics • Data on births, deaths, fetal deaths, marriages, and divorces • Collected by state • Information shared with National Center for Health Statistics • Linked Birth and Infant Death Data Set
- 61. © 2013 Clinical Trials • Research project in which new treatments and tests are investigated • Protocols • ClinicalTrials.gov o Information includes summary of purpose of study, recruiting status, criteria for participation, location of trial and contact information
- 62. © 2013 Phases of Clinical Trials • Phase I: safety • Phase II: effectiveness and safety • Phase III: effectiveness, side effects, and comparison to other available treatment • Phase IV: treatment after entered market
- 63. © 2013 Health Services Research Databases • Research concerning healthcare delivery system • Agency for Healthcare Research and Quality o Healthcare Cost and Utilization Project
- 64. © 2013 National Library of Medicine • Medical Literature, Analysis, and Retrieval System Online (MEDLINE) o Biographical listings for publication • Unified Medical Language System (UMLS) o Links between different information systems
- 65. © 2013 Health Information Exchange • Patient-specific data • Used for patient care
- 66. © 2013 Data for Performance Measurement • Database for core performance measures o Required for Joint Commission and CMS
- 67. © 2013 Processing and Maintenance of Secondary Databases • Manual vs. automated methods of data collection o Abstracting o Downloads from other system • Vendor systems versus facility-specific systems
- 68. © 2013 Data Stewardship Issues Associated with Secondary Data Collection and Use • Concerns regarding secondary data o Ownership o Unauthorized reuse of data o Spotty confidentiality and security • Data stewardship o Rights of stakeholders to access, use and control data maintained about their care
- 69. © 2013 Data Quality Issues • Accuracy of the data o Edits • Consistency of the data o Reliability • Interrater reliability • Comprehensiveness of data • Timeliness
- 70. © 2013 Data Confidentiality • Guaranteeing the privacy of personal health information • HIPAA covered entities • Entities not covered by HIPAA
- 71. © 2013 Data Definitions and Standards • Uniform terminology • Define terms
- 72. © 2013 Rights of Stakeholders to Rights of Access, Use, and Control • Stakeholder is someone affected by issue o Patient and providers • Patients do not have exclusive ownership of information o Have right to know what is collected and uses of data • Transparency