The use of routinely collected computer data for research in primary care: Opportunities and challenges

Family Practice

Volumn 23, Issue 2, 2006, Pages 253-263

  de Lusignan, Simon ^a   van Weel, Chris ^b  

^a ST GEORGE'S UNIVERSITY OF LONDON   (United Kingdom)

^b RADBOUD UNIVERSITY MEDICAL CENTER   (Netherlands)

Author keywords

Continuity of patient care; Family practice; Health services accessibility; Models; Organizational

Indexed keywords

COMPUTER SYSTEM; CONFIDENTIALITY; CONTROLLED STUDY; GENERAL PRACTICE; HEALTH CARE QUALITY; HUMAN; INFORMATION PROCESSING; MEDICAL INFORMATION SYSTEM; MEDICAL RECORD; MEDICAL RESEARCH; PRIMARY MEDICAL CARE; QUALITY CONTROL; REVIEW; STANDARDIZATION; SYSTEMATIZED NOMENCLATURE OF MEDICINE; DISEASE CLASSIFICATION; NOMENCLATURE; SOCIAL CARE; UNITED KINGDOM; WORLD HEALTH ORGANIZATION;

BIOMEDICAL RESEARCH; DATA COLLECTION; DATABASES; HUMANS; MEDICAL INFORMATICS; MEDICAL RECORDS SYSTEMS, COMPUTERIZED; NATIONAL HEALTH PROGRAMS; NETHERLANDS; PRIMARY HEALTH CARE;

EID: 33645166993     PISSN: 02632136     EISSN: 14602229     Source Type: Journal    
DOI: 10.1093/fampra/cmi106     Document Type: Review

References (105)

1. Pickles W. Epidemiology in a country practice. (First published 1939). London: RCGP; 1994.
2. Huygen FJA. Family Medicine. London: RCGP; 1983.
3. Fry J. General Practice: The Facts. Oxford: Radcliffe Medical Press; 1992.
4. Zuboff S. In the Age of the Smart Machine: The Future of Work and Power. New York: Basic Books; 1988.
5. Sullivan F. What is health informatics? J Health Serv Res Policy 2001; 6: 251-254.
6. Allen J, Gay B, Crebolder H et al. The European definitions of the key features of the discipline of general practice: The role of the GP and core competencies. BJGP 2002; 52: 526-527.
7. de Lusignan S. What is primary care informatics? J Am Med Inform Assoc 2003; 10: 304-309.
8. de Lusignan S, Teasdale S, Little D et al. Comprehensive computerised primary care records are an essential component of any national health information strategy: Report from an international consensus conference. Inform Prim Care 2004; 12: 255-264.
9. Ash JS, Bates DW. Factors and forces affecting EHR system adoption: report of a 2004 ACMI discussion. J Am Med Inform Assoc 2005; 12: 8-12.
10. Hasvold T. A computerized medical record. 'The Balsfjord system'. Scand J Prim Health Care 1984; 2: 125-128.
11. Krogh-Jensen P. Electronic records for general practice. The Danish system. Scand J Prim Health Care. 1984; 2: 121-123.
12. Knottnerus JA. Role of the electronic patient record in the development of general practice in The Netherlands. Methods Inf Med 1999; 38: 350-354.
13. Benson T. Why British GPs use computers and hospital doctors do not. Proc AMIA Symp 2001; 42-46.
14. Taylor H, Leitman R. European physicians especially in Sweden, Netherlands and Denmark, Lead U.S. in use of electronic medical records. Harris Interactive: Healthcare News 2002; 2: 1-3. Available at: http://www.harrisinteractive.com/news/newsletters/healthnews/ HI_HealthCareNews2002vol2_Iss16.pdf.
15. Berner ES, Detmer DE, Simborg D. Will the wave finally break? A brief view of the adoption of electronic medical records in the United States. J Am Med Inform Assoc. 2005; 12: 3-7.
16. Tomlin A, Hall J. Linking primary and secondary healthcare databases in New Zealand. N Z Med J 2004; ll7: U816.
17. Palomo L, Gervas J, Garcia-Olmos L. The frequency of illnesses attended and its relationship with the maintenance of the family doctor's skill - Article in Spanish. Aten Primaria 1999; 23: 363-370.
18. Mitchell E, Sullivan F, Grimshaw JM, Donnan PT, Watt G. Improving management of hypertension in general practice: A randomized controlled trial of feedback derived from electronic patient data. Br J Gen Pract 2005; 55: 94-101.
19. de Lusignan S, Hague N, Brown A, Majeed A. An educational intervention to improve data recording in the management of ischaemic heart disease in primary care. J Public Health (Oxf) 2004; 26: 34-37.
20. Pringle M, Hobbs R. Large computer databases in general practice. BMJ 1991; 312: 741-742.
21. Black NA. Developing high-quality clinical databases. The key to a new research paradigm. BMJ 1997; 315: 831-832.
22. Chapman WW, Christensen LM, Wagner MM et al. Classifying free-text triage chief complaints into syndromic categories with natural language processing. Artif Intell Med 2005; 33: 31-40.
23. Chen L, Friedman C. Extracting phenotypic information from the literature via natural language processing. Medinfo 2004; 2004: 758-762.
24. Liu H, Friedman C. CliniViewer: A tool for viewing electronic medical records based on natural language processing and XML. Medinfo 2004; 2004: 639-643.
25. Janetzki V, Allen M, Cimino JJ. Using natural language processing to link from medical text to on-line information resources. Medinfo 2004; 2004: 1665.
26. Hsieh Y, Hardardottir GA, Brennan PF. Linguistic analysis: Terms and phrases used by patients in e-mail messages to nurses. Medinfo 2004; 2004: 511-515.
27. University of North Carolina. International Classification of Disease. Available at: http://www.cpc.unc.edu/dataarch/nhealth/icd.html.
28. Rector AL. Clinical terminology: Why is it so hard? Methods Inf Med 1999; 38: 239-252.
29. Open Clinical Glossary. Available at: http://www.openclinical.org/glossary.html.
30. Bentzen N. (ed). WONCA Dictionary of General/Family Practice. Copenhagen: Maanedsskrift for Praktisk Laegegerning; 2003.
31. Australian Standard. The language of health concept representation. Sydney: Standards Australia; 2005.
32. Wilson R, Purves I. Coding and Nomenclatures: A Snapshot from around the world. Available at: http://www.cs.man.ac.uk/mig/links/RCSEd/coding-use-snapshot.htm.
33. Lagasse R, Desmet M, Jamoulle M et al. European situation of the routine medical data collection and their utilisation for health monitoring: Euro-med-data Final Report; 2001. Available at: http://www.ulb.ac.be/esp/emd/Emd_rep.pdf.
34. Deckers J, Schellevis F. Health Information from Primary Care. Final report. Utrecht: Netherlands Institute for Health Services Research (NIVEL). Available at: http://www.nevel.nl.
35. de Lusignan S, Minmagh C, Kennedy J, Zeimet M, Bommezijn H, Bryant J. A survey to identify the clinical coding and classification systems currently in use across Europe. Medinfo 2001; 10: 86-89.
36. ICPC-2. International classification of primary care an introduction. Available at: http://www.ulb.ac.be/esp/wicc/icpc2.html.
37. NHS Information Authority. SNOMED CT (Systematized Nomenclature of Medicine - Clinical Terms.) Available at: www.nhsia.nhs.uk/snomed/.
38. National Centre for Classification in Health (NCCH). Australian Modification of the World Health Organization ICD-10-AM. Available at: http://www3.fhs.usyd.edu.au/ncch/.
39. Britt H. A new coding tool for computerised clinical systems in primary care - ICPC plus. Aust Fam Physician. 1997; 26(Suppl. 2): S79-s82.
40. O'Halloran J, Miller GC, Britt H. Defining chronic conditions for primary care with ICPC-2. Fam Pract 2004; 21: 381-386.
41. de Lusignan S, Stephens PN, Adal N, Majeed A. Does feedback improve the quality of computerized medical records in primary care? J Am Med Inform Assoc 2002; 9: 395-401.
42. Scobie S, Basnett I, McCartney P. Can general practice data be used for needs assessment and health care planning in an inner-London district? J Public Health Med 1995; 17: 475-483.
43. de Lusignan S, Dzregah B, Hague N, Chan T. Cholesterol management in patients with ischaemic heart disease: An audit-based appraisal of progress towards clinical targets in primary care. Br J Cardiol 2003; 10: 223-228.
44. Carey IM, Cook DG, De Wilde S et al. Implications of the problem orientated medical record (POMR) for research using electronic GP databases: A comparison of the Doctors Independent Network Database (DIN) and the General Practice Research Database (GPRD). BMC Fam Pract 2003; 4: 14.
45. Majeed A. Sources, uses, strengths and limitations of data collected in primary care in England. Health Statistics Quarterly 2004; 21: 23-29. Available at: http://www.statistics. gov.uk/downloads/theme_health/HSQ21.pdf.
46. Horsfield P, Teasdale S. Generating information from electronic patient records in general practice: A description of clinical care and gender inequalities in coronary heart disease using data from over two million patient records. Inform Prim Care 2003; 11: 137-144.
47. van Weel C. Longitudinal research and data collection in primary care. Ann Fam Med 2005; 3(Suppl. 1): S46-s51.
48. van Weel C, Smith, H., Beasley, JW. Family practice research networks. Experience from three countries. J Fam Pract 2000; 49: 938-943.
49. de Grauw WJ, van de Lisdonk EH, van den Hoogen HJM, van Weel C. Cardiovascular morbidity and mortality of type 2 diabetes patients. Diabet Med 1995; 12: 117-122.
50. Weel-Baumgarten EM van, Bosch WJHM van den, Hoogen HJM van den, Zitman FG. Ten year follow-up of depression after diagnosis in general practice. Br J Gen Pract 1998; 48: 1643-1646.
51. Brown SH, Lincoln MJ, Groen PJ, Kolodner RM. VistA - U.S. Department of Veterans Affairs national-scale HIS. Int J Med Inform 2003; 69: 135-156.
52. Penz JF, Brown SH, Carter JS et al. Evaluation of SNOMED-CT coverage of veterans health administration terms. Medinfo 2004; 2004: 540-544.
53. National Centre for Health Statistics (NCHS). National Ambulatory Medical Care Survey (NAMCS). Available at: http://www.cdc.gov/nchs/about/major/ahcd/namcsdes.htm.
54. Australian General Practice Statistics and Classification Centre (AGPSCC). The BEACH (Bettering the Evaluation And Care of Health) Project. Availbale at: http://www.fmrc.org.au/beach.htm.
55. New Zealand Ministry of Health. The National Primary Medical Care Survey (NatMedCa). Available at: http://www.moh.govt.nz/natmedca.
56. First WH. Healthcare in the 21st Century. N Engl J Med 2005; 352: 267-272.
57. Whitelaw FG, Nevin SL, Milne RM, Taylor RJ, Taylor MW, Watt AH. Completeness and accuracy of morbidity and repeat prescribing records held on general practice computers in Scotland. Br J Gen Pract 1996; 46: 181-186.
58. Herbert, CP. Future of research in family medicine: Where to from here? Ann Fam Med 2004; 2(Suppl. 2): S60-s64.
59. Roland M. Linking physicians' pay to the quality of care - a major experiment in the United Kingdom. N Engl J Med 2004; 351: 1448-1454.
60. van Weel C. Validating long term morbidity recording. J Epidemiol Commun Health 1995; 49(Suppl. 1): 29-32.
61. van Weel-Baumgarten EM, van den Bosch WJHM, van den Hoogen HJM, Zitman FG The validity of the diagnosis of depression in general practice: Is using criteria for diagnosis as a routine the answer? Br J Gen Pract 2000; 50: 284-287.
62. Gill JM, Dansky BS. Use of an electronic medical record to facilitate screening for depression in primary care. prim care companion. J Clin Psychiatry 2003; 5: 125-128.
63. Gill JM, Ewen E, Nsereko M. Impact of an electronic medical record on quality of care in a primary care office. Del Med J. 2001; 73: 187-194.
64. Adams WG, Mann AM, Bauchner H. Use of an electronic medical record improves the quality of urban pediatric primary care. Pediatrics 2003; 111: 626-632.
65. Sullivan FM, McEwan N, Murphy G. Regional repositories, reintermediation and the new GMS contract: Cardiovascular disease in Tayside. Inform Prim Care 2003; 11: 215-221.
66. National Health Service. NHS Number. Available at: http://www.nhsia.nhs.uk/nnp/pages/default.asp.
67. Open Source Initiative (OSI). Available at: http://www.opensource.org/.
68. Health Level Seven (HL7). Available at: http://www.hl7.org/.
69. Emery J, Hayflick S. The challenge of integrating genetic medicine into primary care. BMJ 2001; 322: 1027-1030.
70. Emery J, Lucassen A, Murphy M. Common hereditary cancers and implications for primary care. Lancet 2001; 358: 56-63.
71. Lowrance WW. The promise of human genetic databases. BMJ 2001; 322: 1009-1010.
72. Sullivan FM, Pell JP, Sweetland M, Morris AD. How could primary care meet the informatics needs of UK Biobank? A Scottish proposal. Inform Prim Care 2003; 11: 129-135.
73. Hippisley-Cox J, Hammersley V, Pringle M, Coupland C, Crown N, Wright L. How useful are General Practice Databases for research? analysis of the accuracy and completeness in one research network. Health Inform J 2004; 10: 91-109.
74. Fleming DM. The denominator for audit in general practice. Fam Pract 1985; 2: 76-81.
75. Millett C, Bardsley M, Binysh K. Exploring the effects of population mobility on cervical screening coverage. Public Health 2002; ll6: 353-360.
76. Robson J, Falshaw M. Audit of preventive activities in 16 inner London practices using a validated measure of patient population, the 'active patient' denominator. Healthy Eastenders Project. Br J Gen Pract 1995; 45: 463-466.
77. Juncosa S, Bolibar B. Measuring morbidity in primary care - Article in Spanish. Aten Primaria 2001; 28: 602-607.
78. Falkoe E, Rasmussen KB, Maclure M, Schroll H. Statistical linkage of treatment to diagnosis for research and monitoring of practice patterns. Methods Inf Med 2004; 43: 282-286.
79. Bayegan E, Nytro O, Grimsmo A. Ranking of information in the computerized problem-oriented patient record. Medinfo 2001; 10: 594-598.
80. Le Pont F, Letrilliart L, Massari V, Dorleans Y, Thomas G, Flahault A. Suicide and attempted suicide in France: Results of a general practice sentinel network, 1999-2001. Br J Gen Pract 2004; 54: 282-284.
81. de Grauw W, van de Lisdonk EH, van den Hoogen HJM, van Weel C. Cardiovascular morbidity and mortality of type 2 diabetes patients. Diabetic Med 1995; 12: 117-122.
82. Jordan K, Porcheret M, Croft P. Quality of morbidity coding in general practice computerized medical records: A systematic review. Fam Pract 2004; 21: 396-412.
83. Tierney WM, McDonald CJ. Practice databases and their uses in clinical research. Stat Med 1991; 10: 541-557.
84. de Lusignan S, Valentin T, Chan T et al. Problems with primary care data quality: Osteoporosis as an exemplar. Inform Prim Care 2004; 12: 147-156.
85. Letrilliart L, Guiguet M, Flahault A. Reliability of report coding of hospital referrals in primary care versus practice-based coding. Eur J Epidemiol 2000; 16: 653-659.
86. Cricelli C, Mazzaglia G, Samani F et al. Prevalence estimates for chronic diseases in Italy: Exploring the differences between self-report and primary care databases. J Public Health Med 2003; 25: 254-257.
87. Soler JK. Sick leave certification: A unique perspective on frequency and duration of episodes - a complete record of sickness certification in a defined population of employees in Malta. BMC Fam Pract 2003; 4: 2.
88. Garside P. Are we suffering from change fatigue? Qual Saf Health Care 2004; 13: 89-90.
89. Axelsson R. The organizational pendulum - healthcare management in Sweden 1865-1998. Scand J Public Health 2000; 28: 47-53.
90. College of General Practitioners. A classification of disease. J Coll Gen Pract 1959; 2: 140-159.
91. de Grauw WJ, van Gerwen WH, van de Lisdonk EH, van den Hoogen HJ, van den Bosch WJ, van Weel C. Outcomes of audit-enhanced monitoring of patients with type 2 diabetes. J Fam Pract 2002; 51: 459-464.
92. Carr-Hill RA, Rice N, Roland M. Socioeconomic determinants of rates of consultation in general practice based on fourth national morbidity survey of general practices. BMJ 1996; 312: 1008-1012.
93. Lowrance W. Learning from experience: Privacy and the secondary use of data in health research. J Health Serv Res Policy 2003; 8(Suppl 1): 2-7.
94. Bolton Research Group. Patients' knowledge and expectations of confidentiality in primary health care: A quantitative study. Br J Gen Pract 2000; 50: 901-902.
95. Fletcher J, Marriott J, Phillips D. Data protection, informed consent, and research interpretation of legislation should reflect patients' views. BMJ 2004; 328: 1437.
96. Classification Committee of WONCA. An international classification of health problems in primary care (ICHPPC). London: The Royal College of General Practitioners, Occasional paper 1; December 1976.
97. World Health Organisation. Manual of the International Statistical classification of diseases injuries and causes of Death. (8th Revision). Geneva: WHO; 1967.
98. Lamberts H, Meads S, Wood M. Classification of reasons why person seek primary care: Pilot study of a new system. Public Health Rep 1984: 99: 597-605.
99. Classification Committee of WONCA. International Classification of Process in Primary Care (IC-process-PC). Oxford: Oxford University Press; 1986.
100. WONCA (World Organisation of National Colleges and Academies of Family Physicians). International Classification for Primary Care (ICPC-2). Available at: http://www.ulb.ac.be/esp/wicc/icpc2.html.
101. Britt H. Miller G. ICPC-Plus. An extended version of the International Classification for Primary Care for computerised clinician systems. London: British Computer Society, Proceedings of the annual conference of the Primary Healthcare Specialist Group; 1996. 107-112.
102. Robinson D. Wanger K, Price C. The clinical terms and ICPC: Identifying equivalence and enabling compatibility for 'Non-medical' terms. British Computer Society, Primary Care Specialist Group Annual Conference 1998. Available at: http://phcsg.ncl.ac.uk/conferences/cambridge1998/robinson.htm.
103. O'Neil M, Payne C, Read JD. Read codes version 3-a user led terminology. Methods Inf Med 1995; 34: 187-192.
104. Stearns MQ, Price C, Spackman KA, Wang AY. SNOMED clinical terms: overview of the development process and project status. In Bakken S (ed.) Proceedings of the 2001 AMIA Fall Symposium. Philadelphia: Hanley and Belfus; 2001: 662-666.
105. NHS Information Authority. Global Standard for Healthcare Terminology. Birmingham: NHSIA; 1999. Available at: http://www.nhsia.nhs.uk/snomed/pages/publications.asp.