1. © 2016 Health Information Management Technology: An Applied Approach Chapter 7 Secondary Data Sources

2. Introduction Databases are used to see trends in data Facility-specific registry Population-based registry

3. 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 stewardship

4. Differences Between Primary and Secondary Data Sources and Databases Primary data source Secondary data source Ways to classify data o Patient identifiable data o Aggregate data Secondary data are usually aggregate data

5. Purposes and Users of Secondary Data Sources Four major purposes o Quality, performance, and patient safety o Research o Population health o Administration

6. Internal Users Users within the organization o Medical staff o Management staff

7. External users Individuals and institutions outside the facility o State data banks o Federal agencies

8. Types of Secondary Data Sources Facility-specific indexes o Disease o Operation o Physician

9. 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

10. Disease and Operation Index Operation o Similar to disease index o Numerical order by procedure code o May also include surgeon’s name

11. Physician Index Listing of cases in order by physician name or number

12. 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

13. Terminology Associated with Registries Accession number o Made up of year and sequential number Accession registry Demographic information Facility-based registries Incident Population-based registry

14. 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. 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. 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 Population-based registries rely on hospitals, physician offices, and other healthcare facilities to identify cases

17. 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

18. 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

19. 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

20. Follow-up Methods Hospital records Physician Contacting patients or relatives Newspaper obituaries Social Security Death Index

21. Reporting and Follow-up for Cancer Registry Data Population-based registry o Usually does not collect follow-up data

22. 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

23. 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

24. Education and Certification for Cancer Registries National Cancer Registrars Association o Standards for formal education programs Certified Tumor Registrar (CTR)

25. 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

26. 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

27. 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

28. Standards and Approval Process for Trauma Registries American College of Surgeons Trauma registry required for level I trauma center

29. Education and Approval Process of Trauma Registrars May be: o Registered Health Information Technician (RHIT) o Registered Health Information Administrator (RHIA) 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)

30. 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

31. 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

32. 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

33. 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

34. 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 Track patients not seen in one year

35. Diabetes Registries Population-based registries o Incidence Purpose of follow-up is to prevent complications

36. 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

37. 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 or the FDA Where report was submitted

38. 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

39. Transplant Registry May track who needs an 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

40. 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

41. Pre-transplant Data Demographic data Diagnosis Status codes regarding medical urgency Functional status If patient is on life support Previous transplants Histocompatibility

42. Information on Donor: Death Cause and circumstance of death Organ procurement and consent process Medications the donor was taking Other donor history

43. Information on Donor: Living Relationship to donor to recipient (if any) Clinical information Information on organ recovery Histocompatibility

44. Reporting and Follow-up for Transplant Registries Reporting o Information on donors and recipients o Survival rates o Length of time on waiting list o Death rates

45. 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 o Immunosuppressive drugs

46. 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

47. Data Collection for Immunization Registries Patient name Birth data Sex, race, ethnicity Birth order Birth state and country Mother’s name (first, middle, last, and maiden) Vaccine type Vaccination date Vaccine lot number

48. 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

49. 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 o Healthy People 2020

50. 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

51. 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 diagnosis and procedure codes o MS-DRGs

52. 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 non-reporting Data used in credentialing process

53. 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

54. National Health Care Survey Public health survey Made up of multiple surveys o National Hospital Care Survey o National Survey of Ambulatory Care o National Nursing Home Survey o National Home and Hospice Care Survey Uses health record data

55. Other Public Health Databases National Electronic Disease Surveillance National Health Interview Survey National Immunization Survey State and local databases

56. 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

57. 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

58. Health Services Research Databases Research concerning healthcare delivery system Agency for Healthcare Research and Quality o Healthcare Cost and Utilization Project

59. 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

60. Health Information Exchange Patient-specific data Used for patient care

61. Data for Performance Measurement Database for core performance measures o Required for Joint Commission, CMS, and some health plans