Data Detective: Finding the Gems of Health Data

1. Data Detective: Finding the Gems of Health Data Hongjie Wang Information and Education Services University of Connecticut Health Center Health Data Course

2. Overview of Health Data • What is statistics, data and a data set? • Why is health data important? • What are the major types of health data? • How is health data collected and managed? • What are the common tools to retrieve data? • How to use the tools to create your own data sets? Health Data Course

3. What is Statistics • Recorded data like number of car accidents • Characteristics calculated for a set of data (Mean, Standard Deviation and ratio) • statistical methodology and theory Health Data Course

4. What is Statistics “A body of techniques and procedures dealing with collection, organization, analysis, interpretation and presentation of information that can be stated numerically.” Kuzma, J. W. and Bohnenblust, S.E. (2001) Basic Statistics for the Health Sciences, 4th Edition. Health Data Course

5. What is Data • Can mean different things • In computer programming, all software is divided into two general categories: data and programs. Programs are collections of instructions for manipulating data. • In database management systems, data files are the files that store the database information, whereas other files, such as index files and data dictionaries, store administrative information, known as metadata. • In statistics, data is represented by counts Health Data Course

6. What is Data… • Can be hard to define • In October, 1999 a law was passed “"to require Federal awarding agencies to ensure that all data produced under an award will be made available to the public through the procedures established under the Freedom of Information Act." Health Data Course

7. What is Data… • Can be confusing • Data and database • Text-oriented databases • Natural language texts of documents • Number-oriented databases • Statistics • Tables • Counts Health Data Course

8. What is Data… • Data Definition - “Data are the facts and figures that are collected, analyzed, and summarized for presentation and interpretation.” Encyclopedia of Britannica • “Values collected through record keeping or by polling, observing, or measuring, typically organized for analysis or decision making. More simply, data is facts, transactions and figures.” Data Mining Glossary http://www.twocrows.com/glossary.htm#anchor314309 Health Data Course

9. Qualitative Data • The raw data is merely label or category • Data in the form of words and pictures • Used to arouse perceptions,feelings, and opinions Health Data Course

10. Qualitative Data … • Qualitative data examples • Suicide methods (self-inflicted; physician-assisted) • Questionnaire response (agree, disagree, neutral) Health Data Course

11. Quantitative Data… • The raw data is numerical • Used for making comparisons Health Data Course

12. Quantitative Data… • Quantitative data examples • Height • Weight • Number of people suffering diabetes Health Data Course

13. Quantitative Data ... • Quantitative data (using numbers) • Provide the what, who,when and where for health-related events • Measurable and tangible • Involve counting of people, behaviors, conditions, or other discrete events • Qualitative data (using words) • Explain the why and the how of health-related events • Involve observing people in selected places and listening to discover how they fee and why they might feel that way. Health Data Course

14. Quantitative Data… • Quantitative health data can focus on individuals or entire populations. • Individuals • Patient’s medical record • Populations • Communities • Cities • Counties • States Health Data Course

15. Data, Info. and Knowledge • Items representing facts, text, graphics, bit-mapped images, sound, analog or digital live-video segments. Data is the raw material of a system supplied by data producers and is used by information consumers to create information. • Data, information, knowledge and wisdom • 500000 is data. Health Data Course

16. What is Information • Data and Information • Data on its own has no meaning, only when interpreted by some kind of data processing system does it take on meaning and become information. • “A check of $5000.00 was sent to me." is information. Health Data Course

17. What is Knowledge • Data, Information and Knowledge • People or computers can find patterns in data to perceive information, and information can be used to enhance knowledge. Since knowledge is prerequisite to wisdom, we always want more data and information. But, as modern societies verge on information overload, we especially need better ways to find patterns. • "Nobody owes me that much money" is knowledge. Health Data Course

18. What is Wisdom • Data, Information, Knowledge and Wisdom • The ability to discern or judge what is true, right, or lasting; insight. • Common sense; good judgment: “It is a characteristic of wisdom not to do desperate things” (Henry David Thoreau). • The sum of learning through the ages; knowledge: “In those homely sayings was couched the collective wisdom of generations” (Maya Angelou). • "I'd better talk to the person before I spend it, because of what has happened to other people" is wisdom. Health Data Course

19. What is Data:Relationship • 20000 is data. • “In 2002, children who died from vehicle accidents jumped 10% to 20,000" is information. • “More youngsters actually died from vehicles backing up than from hot cars" is knowledge. • “I believe the prevention program should focus on children getting hurt from vehicles backing up, not on children left inside a hot car which is sensationalized in the media " is wisdom. Health Data Course

20. What Are Data Sets “Data sets are a collection of similar and related raw data records in a computer file for the purpose of analysis” “A datasetis a compilation of data elements which represent the characteristics of a systematically drawn sample of observations.” Health Data Course

21. What Are Data Sets Health Data Course

22. Why Health Data • Historical Highlights • Health data and its usage • Health data and statistics • Health data and publications • Health data and me Health Data Course

23. Historical Highlights 1662 1854 After WW II John Graunt, the first statistician to quantify patterns of birth, death and disease occurrence. The 1950 study linking smoking and lung Cancer, and the Framingham Study of cardiovascular disease Lead in Gasoline 1992: SIDS Health Data Course

24. Health Data Usage • The backpack story: CNN 2/20/1999 • According to the U.S. Consumer Product Safety Commission, of the 6,512 children treated in hospital emergency rooms last year for injuries related to shouldering backpacks, 3,524, or 54 percent, involved children ages 5 to 14. Backpack-related injuries are up 256 percent since 1996.More Children Suffering From Back Pain, Study Says Health Data Course

25. Health Data Usage… • “Back to School. What a Pain” 9/1/2002 The NYT • State Senator in CA co-sponsored a bill that calls for lighter backpacks (divide textbook into two; buy two sets textbooks; backpacks on wheels.) Health Data Course

26. Health Data Usage… • “Acute Backpack Injuries in Children” Dr. Brent Wiersema Pediatrics. Vol. 111 (1), 2003 • “Conclusions: Although the CPSC data on backpack injuries is frequently quoted in articles relating backpacks with back injury, 89% of backpack injuries in our study do not involve the back. Our study does not support the hypothesis that back injury is the major problem with book backpacks in the emergency department setting.” Health Data Course

27. Health Data Usage… • Assess the health of a community or population; • Search for causes of disease, injury and disability; • Plan programs to meet community needs; • Measure progress in prevention and control efforts Health Data Course

28. Health Data Usage… • The student preparing a report or speech • The health care practitioner compiling a patient info. Brochure or journal article. • The job seeker identifying employment possibilities throughout the U.S. • The consumer of medical services comparing costs of treatments or procedures. Health Data Course

29. Health Data and Life Cycle CDC WONDER Births Deaths Health behaviors ICD-9 ICD-10 Disease/injuries BRFSS Cancer Query Systems WISQARS Health Data Course

30. Health Data and Me • “Data is what distinguishes the dilettante from the artist,” George Higgins 1988 Health Data Course

31. Health Data and Me. Six million Americans have diabetes and don’t know it Are YOU One of Them? By Josh Fischman Reader’s Digest September 2002 Page 94 Health Data Course

32. Health Data and Me.. You Said It Go Figure “The article “Are You One of Them?” begins, “Six million Americans have diabetes and don’t know it.” This seems odd. If their doctors know it and told you, why didn’t they tell their patients? And how do you really know six million diabetics are out there? Perhaps you made one of those well-know Scientific Wild Ass Guesses (SWAG), in which case there may be few, some, many, six million or even 100 million. John Haumersen. Racine, Wis. Health Data Course

33. Health Data and Me… From the Editor: Mark Twain once referred to “lies, damned lies and statistics.” We did our best to steer clear of all three, carefully checking all facts. The estimate number of six million Americans with undiagnosed diabetes is from the federal Centers for Disease Control and Prevention. The CDC calculated the figure using national health survey and census data. Health Data Course

34. Major Health Data Types • Four major types of health data • Health outcome (health status) data • Risk factor data • Resource data • Demographic data Health Data Course

35. Health Data Types • Health outcome (health status) data • Disease • Injury • Physical disability • Death Health Data Course

36. Health Data: Health Outcome • What does health outcome data do? • It measures the presence or absence of disease, injury, physical disability or death. • What does health outcome data include? • Records (Birth, death, marriage records) • Interviews • Questionnaires • Registries (SEER program) Health Data Course

37. Health Data: Risk Factor • What does risk factor data do? • Explain a particular health outcome • What does risk factor data include? • Disease agents (high blood pressure) • Personal characteristics (age, gender, race) • Behavioral factors (exercise, diet, alcohol use) • Environmental factors (air pollution, contaminated ground water) Health Data Course

38. Health Data: Resources • What does resources data do? • Describe the resources available in communities to treat diseases or alleviate risk factors. • What does resources data include? • Health care facilities • Health care professionals • Smoking cessation classes • # of people completing a smoking cessation class Health Data Course

39. Health Data: Demographic • What does demographic data do? • Used to understand the population of interest • What does demographic data include: • Population (age, race, sex, personal income marital status, educational attainment) • Households (household size, structure, family type and household income) Health Data Course

40. Health Data Collection • Who collects health data • How is health data collected • How is health data managed Health Data Course

41. Who Collects Health Data • Government agencies at various levels • Research centers, organizations, societies • Universities • Private sectors Health Data Course

42. Who Collects Health Data: ExampleDepartment ofHealth and Human Services Secretary Deputy Secretary Director, Office of Intergovernmental Affairs and Regional Directors Chief Staff Executive Secretary Assistant Secretary Administration For Children & Families Commissioner Food and Drug Admin. General Counsel Assistant Secretary For Health Administrator Health Resources and Services Admin. Assistant Secretary for Management and Budget Assistant secretary for Aging Director Office for Civil Rights Administrator Health Care Financing Admin. Assistant Secretary for Planning and Evaluation Director Indian Health Services Inspector General Admin.Agency for Healthcare Research and Quality Director NIH Chair Departmental Appeals Board Assistant Secretary For Legislation Administrator Substance Abuse and Mental Services Admin. Administrator CDC Assistant Secretary For Public Affairs Admin. Agency for Toxic Substances and Disease Registry Director Program Support Center Health Data Course

43. National Institute of Health Aging Clinical Center Environmental health Sciences. Mental Health Fogarty International Center. Neurological Disorders & Stroke Alcohol Abuse And Alcoholism Complementary and Alternative Medicine Allergy and Infectious Disease Deafness and Other Communication Disorders General Medical Sciences Nursing Research Arthritis and Musculoskeletal and Skin Disease Dental and Craniofacial Disease Heart, Lung, and Blood diseases Ophthalmological Diseases Cancers Diabetes, Digestive, and Kidney Diseases Human Genome Research Research Resources Child Health and Human Development Drug Abuse Medical Library (NLM) Scientific Review Health Data Course

44. Databases by NLM BIOETHICSLINE AIDSLINE MEDLINE Profiles in Science MEDLINEplus. PubMed Clinical Alerts AIDSDRUGS Multiple Congenital Anomaly/Mental Retardation Syndromes Clinical Trials AIDSTRIALS SPACELINE DIRLINE HISTLINE NLM Gateway TOXNET DOCLINE LOCATORplus NLM Online Exhibitions Unified Medical Language System HSTAT MESH POPLINE Visible Human Project Health Data Course

45. Department ofHealth and Human Services Secretary Deputy Secretary Director, Office of Intergovernmental Affairs and Regional Directors Chief Staff Executive Secretary Assistant Secretary Administration For Children & Families Commissioner Food and Drug Admin. General Counsel Assistant Secretary For Health Administrator Health Resources and Services Admin. Assistant Secretary for Management and Budget Assistant secretary for Aging Director Office for Civil Rights Administrator Health Care Financing Admin. Assistant Secretary for Planning and Evaluation Director Indian Health Services Inspector General Admin.Agency for Healthcare Research and Quality Director NIH Chair Departmental Appeals Board Assistant Secretary For Legislation Administrator Substance Abuse and Mental Services Admin. Administrator CDC Assistant Secretary For Public Affairs Admin. Agency for Toxic Substances and Disease Registry Director Program Support Center Health Data Course

46. CDC Organizational Chart National Center for HIV, STD, and TB Prevention National Center for Infectious Diseases National Center for Injury Prevention and Control National Immunization Program Epidemiology Practice Program Office Public Health Practice Program Office National Instit. for Occupational Safety and Health Health Data Course

47. Data Collection by NCHS National Health Interview Survey Vital Statistics National Hospital Discharge Survey National Immu- nization Survey National Survey of Ambulatory Surgery State and Local Area Integrated Telephone Survey National Health Interview Survey on Disability National Death Index National Survey of Family Growth Linked Birth/ Infant Death Program National Hospital Ambulatory Medical Care Survey Second Longitudinal Study of Aging Early Childhood Longitudinal Study National Nursing Home Survey NHANES I Epidemiological Follow-up Study Second Supplement on Aging Forms Interviews Registration Telephone Health Data Course

48. How is Health Data Collected • Death certificates • Medical records • Surveys of medical facilities • Coroner’s reports • Police Reports • Registry Forms Health Data Course

49. Immediate Cause Intermediate cause Underlying cause Health Data Course

50. Health Data Course