Use of a medical records linkage system to enumerate a dynamic population over time: The rochester epidemiology project

American Journal of Epidemiology

Volumn 173, Issue 9, 2011, Pages 1059-1068

  St Sauver, Jennifer L ^a   Grossardt, Brandon R ^a   Yawn, Barbara P ^a,c   Melton, L Joseph ^a   Rocca, Walter A ^a,b  

^a Information Technology   (United States)

^b MAYO CLINIC   (United States)

^c OLMSTED MEDICAL CENTER   (United States)

Author keywords

censuses; cohort studies; data collection; epidemiologic research design; information systems

Indexed keywords

AGING POPULATION; CENSUS; COHORT ANALYSIS; DATA ACQUISITION; DATABASE; EPIDEMIOLOGY; HOSPITAL SECTOR; RESEARCH METHOD; SAMPLING;

ADOLESCENT; ADULT; AGED; ARTICLE; CHILD; FEMALE; GERIATRIC PATIENT; HEALTH CARE FACILITY; HUMAN; INFANT; MAJOR CLINICAL STUDY; MALE; MEDICAL INFORMATION SYSTEM; MEDICAL RECORD; MEDICAL RECORD LINKAGE SYSTEM; NURSING HOME; POPULATION RESEARCH; PRESCHOOL CHILD; RESIDENCY EDUCATION; SCHOOL CHILD; VALIDATION PROCESS;

CENSUSES; EPIDEMIOLOGIC STUDIES; HUMANS; MEDICAL RECORD LINKAGE; MINNESOTA; REPRODUCIBILITY OF RESULTS;

MINNESOTA; OLMSTED COUNTY; UNITED STATES;

EID: 79955633775     PISSN: 00029262     EISSN: 14766256     Source Type: Journal    
DOI: 10.1093/aje/kwq482     Document Type: Article

References (42)

1. Porta MS. International Epidemiological Association. A Dictionary of Epidemiology. 5th ed. Oxford, United Kingdom: Oxford University Press; 2008.
2. Acheson ED. The Oxford record linkage study: a review of the method with some preliminary results. Proc R Soc Med. 1964;57(4):269-274.
3. Gill L, Goldacre M, Simmons H, et al. Computerised linking of medical records: methodological guidelines. J Epidemiol Community Health. 1993;47(4):316-319. (Pubitemid 23256209)
4. Kendrick S, Clarke J. The Scottish record linkage system. Health Bull (Edinb). 1993;51(2):72-79.
5. Kendrick SW, Douglas MM, Gardner D, et al. Best-link matching of Scottish health data sets. Methods Inf Med. 1998;37(1):64-68. (Pubitemid 28154760)
6. Walley T, Mantgani A. The UK General Practice Research Database. Lancet. 1997;350(9084):1097-1099. (Pubitemid 27437871)
7. Holman CD, Bass AJ, Rouse IL, et al. Population-based linkage of health records inWestern Australia: development of a health services research linked database. Aust N Z J Public Health. 1999;23(5):453-459. (Pubitemid 29479210)
8. Roos LL, Soodeen R-A, Jebamani L. An information-rich environment: linked-record systems and data quality in Canada. Presented at Statistics Canada Symposium 2001-Achieving Data Quality in a Statistical Agency: A Methodological Perspective, Hull, Canada, October 17-19, 2001.
9. Roos LL,Menec V, Currie RJ. Policy analysis in an informationrich environment. Soc Sci Med. 2004;58(11):2231-2241.
10. Conway PH, VanLare JM. Improving access to health care data: the Open Government strategy. JAMA. 2010;304(9): 1007-1008.
11. Nattinger AB, Pezzin LE, Sparapani RA, et al. Heightened attention to medical privacy: challenges for unbiased sample recruitment and a possible solution. Am J Epidemiol. 2010; 172(6):637-644.
12. Melton LJ III. History of the Rochester Epidemiology Project. Mayo Clin Proc. 1996;71(3):266-274.
13. Kurland LT, Molgaard CA. The patient record in epidemiology. Sci Am. 1981;245(4):54-63.
14. Fan Z. Matching character variables by sound: a closer look at Soundex function and Sounds-Like Operator (*). Presented at SUGI (SAS Users Group International) 29, Montreal, Canada, May 9-12, 2004.
15. US Census Bureau, Population Division. Plans and Rules for Taking the Census, Residence Rules. Washington, DC: US GPO; 2000.
16. US Census Bureau. Census of Population: 1970. Vol. I, Characteristics of the Population, Part 25, Minnesota. Washington, DC: US GPO; 1973.
17. US Census Bureau. 1980 Census of Population. Volume I: Characteristics of the Population. Washington, DC: US GPO; 1982.
18. US Census Bureau. 1980 Census of Population: General Social and Economic Characteristics. Washington, DC: US GPO; 1983.
19. US Census Bureau. 1990 Census of Population and Housing. Summary Tape File 1. Washington, DC: US GPO; 1990.
20. US Census Bureau. Census 2000. Washington, DC: US GPO; 2000.
21. US Census Bureau. Current Population Reports, Series P-60, No. 175, Poverty in the United States: 1990. Washington, DC: US GPO; 1991.
22. Siegel JS, Swanson DA, Shryock HS. The Methods and Materials of Demography. 2nd ed. Amsterdam, the Netherlands: Elsevier; 2004.
23. Minnesota Department of Health. Minnesota Vital Statistics Interactive Queries. St. Paul, MN: Minnesota Department of Health; 2010. (https://pqc.health.state.mn.us/mhsq/frontPage. jsp). (Accessed May 13, 2010).
24. Anderson RN. A method for constructing complete annual U.S. life tables. Vital Health Stat 2. 2000;(129):1-28.
25. Melton LJ III. The threat to medical-records research. N Engl J Med. 1997;337(20):1466-1470.
26. Yawn BP, Yawn RA, Geier GR, et al. The impact of requiring patient authorization for use of data in medical records research. J Fam Pract. 1998;47(5):361-365. (Pubitemid 28541568)
27. Jacobsen SJ, Xia Z, Campion ME, et al. Potential effect of authorization bias on medical record research. Mayo Clin Proc. 1999;74(4):330-338. (Pubitemid 29162532)
28. Access to Health Records. Minn Stat §144.335. 2005.
29. Dean JM, Vernon DD, Cook L, et al. Probabilistic linkage of computerized ambulance and inpatient hospital discharge records: a potential tool for evaluation of emergency medical services. Ann Emerg Med. 2001;37(6):616-626. (Pubitemid 32521679)
30. Victor TW, Mera RM. Record linkage of health care insurance claims. J Am Med Inform Assoc. 2001;8(3):281-288. (Pubitemid 32428755)
31. Beebe TJ, Ziegenfuss JY, St. Sauver JL, et al. HIPAA authorization and survey nonresponse bias. Med Care. 2010. In press.
32. Phillips SJ, Whisnant JP, O'Fallon WM, et al. A community blood pressure survey: Rochester, Minnesota, 1986. Mayo Clin Proc. 1988;63(7):691-699.
33. American Academy of Pediatrics. Recommendations for Preventive Pediatric Health Care. Elk Grove Village, IL: American Academy of Pediatrics; 2008.
34. Szklo M, Nieto FJ. Epidemiology: Beyond the Basics. 2nd ed. Sudbury, MA: Jones and Bartlett Publishers; 2007.
35. Rocca WA, Grossardt BR, de Andrade M, et al. Survival patterns after oophorectomy in premenopausal women: a population-based cohort study. Lancet Oncol. 2006;7(10): 821-828. (Pubitemid 44464065)
36. Elbaz A, Bower JH, Peterson BJ, et al. Survival study of Parkinson disease in Olmsted County, Minnesota. Arch Neurol. 2003;60(1):91-96. (Pubitemid 36078114)
37. Savica R, Grossardt BR, Carlin JM, et al. Anemia or low hemoglobin levels preceding Parkinson disease: a case-control study. Neurology. 2009;73(17):1381-1387.
38. Savica R, Carlin JM, Grossardt BR, et al. Medical records documentation of constipation preceding Parkinson disease: a case-control study. Neurology. 2009;73(21):1752-1758.
39. Office for Civil Rights, US Department of Health and Human Services. Standards for privacy of individually identifiable health information. Final rule. Fed Regist. 2002;67(157):53181-53273.
40. Council for International Organizations of Medical Sciences, World Health Organization. International Ethical Guidelines for Biomedical Research Involving Human Subjects. Geneva, Switzerland: World Health Organization; 2002.
41. Council for International Organizations of Medical Sciences, World Health Organization. International Ethical Guidelines on Epidemiological Studies. Geneva, Switzerland: World Health Organization; 2009.
42. Hansson MG. Need for a wider view of autonomy in epidemiological research. BMJ. 2010;340:c2335.