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The Threat to Medical-Records Research
Abstract
The potential for misuse of personal information by insurers and employers has heightened concern about the confidentiality of medical records. Despite the absence of documented abuses related to approved research projects,1 legislation has been passed in Minnesota that restricts access to medical records for research purposes, and similar measures are proposed in some federal legislation. Such restrictions pose an obvious threat to patient-oriented investigations, such as observational outcome studies, that are based on existing medical-records data and require personal identifiers to link initial interventions with ultimate results. Clinicians and patients alike mostly take for granted the availability of this information, . . .
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“Finally, the current data cannot be generalized to the entire US population because the racial composition of this community is predominantly white (54).”
From Psychosocial Distress and Somatic Symptoms in Community Subjects With Irritable Bowel Syndrome: A Psychological Component Is the Rule (2009) · cites this paper as [54]
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Self-citationMorbidity and Mortality Associated With Paget's Disease of Bone: A Population-Based Study
Wermers, R. A., Tiegs, R. D., Atkinson, E. J., Achenbach, S. J., & Melton, L. J. (2008) · Journal of Bone and Mineral Research · doi:10.1359/jbmr.080215 · Cited by 94
Self-citationChoung, R. S., Locke, G. R., Schleck, C. D., Ziegenfuss, J. Y., Beebe, T. J., Zinsmeister, A. R., & Talley, N. J. (2012) · Journal of Public Health · doi:10.1007/s10389-012-0513-z · Cited by 91
Cystatin C–Guided Vancomycin Dosing in Critically Ill Patients: A Quality Improvement Project
Frazee, E., Rule, A. D., Lieske, J. C., KASHANI, K. B., Barreto, J. N., Virk, A., Kuper, P. J., Dierkhising, R., & Leung, N. (2017) · American Journal of Kidney Diseases · doi:10.1053/j.ajkd.2016.11.016 · Cited by 92
Functional Gastrointestinal Disorders Among People With Sleep Disturbances: A Population-Based Study
Vege, S. S., Locke, G. R., Weaver, A. L., Farmer, S. A., Melton, L. J., & Talley, N. J. (2004) · Mayo Clinic Proceedings · doi:10.4065/79.12.1501 · Cited by 90
Self-citationDo Distinct Dyspepsia Subgroups Exist in the Community? A Population-Based Study
Choung, R. S., Locke, G. R., Schleck, C. D., Zinsmeister, A. R., & Talley, N. J. (2007) · The American Journal of Gastroenterology · doi:10.1111/j.1572-0241.2007.01381.x · Cited by 88
Impaired Glycemia and Diabetic Polyneuropathy
Dyck, P. J. B., Clark, V. M., Overland, C. J., Davies, J. L., Pach, J. M., Dyck, P. J. B., Klein, C. J., Rizza, R. A., Melton, L. J., Carter, R. E., et al. (2012) · Diabetes Care · doi:10.2337/dc11-1421 · Cited by 88
Self-citationVerity, C. M., Manning, D., & Nicoll, A. (2002) · BMJ · doi:10.1136/bmj.324.7347.1210 · Cited by 83
Krambeck, A. E., Lieske, J. C., Li, X., Bergstralh, E. J., Melton, L. J., & Rule, A. D. (2012) · The Journal of Urology · doi:10.1016/j.juro.2012.09.023 · Cited by 80
Self-citationBrown, A. W., Moessner, A. M., Mandrekar, J. N., Diehl, N. N., Leibson, C. L., & Malec, J. F. (2010) · Journal of Neurotrauma · doi:10.1089/neu.2010.1400 · Cited by 79
Strom, B. L. (2006) · Pharmacoepidemiology · doi:10.1002/9780470059876.ch1 · Cited by 78
Schreier, D. J., KASHANI, K. B., Sakhuja, A., Mara, K. C., Tootooni, M. S., Personett, H. A., Nelson, S. Y., Rule, A. D., Steckelberg, J. M., Tande, A. J., et al. (2018) · Clinical Infectious Diseases · doi:10.1093/cid/ciy724 · Cited by 76
Faden, R., KASS, N. E., Whicher, D. M., Stewart, W., & Tunis, S. (2013) · Medical Care · doi:10.1097/mlr.0b013e31829b1e4b · Cited by 75
Angiotensin II Infusion for Shock
Wieruszewski, P. M., Wittwer, E. D., KASHANI, K. B., Brown, D. R., Butler, S. O., Clark, A., Cooper, C. J., Davison, D. L., Gajic, O., Gunnerson, K. J., et al. (2020) · CHEST Journal · doi:10.1016/j.chest.2020.08.2074 · Cited by 75
The Use of Medical Records in Research: What Do Patients Want?
KASS, N. E., Natowicz, M. R., Hull, S. C., Faden, R., Plantinga, L., Gostin, L. O., & Slutsman, J. (2003) · The Journal of Law Medicine & Ethics · doi:10.1111/j.1748-720x.2003.tb00105.x · Cited by 75
Frazee, E. N., Rule, A. D., Herrmann, S. M., KASHANI, K. B., Leung, N., Virk, A., Voskoboev, N., & Lieske, J. C. (2014) · Critical Care · doi:10.1186/cc13899 · Cited by 75
Leibson, C. L., Brown, A. W., Long, K. H., Ransom, J. E., Mandrekar, J. N., Osler, T. M., & Malec, J. F. (2012) · Journal of Neurotrauma · doi:10.1089/neu.2010.1713 · Cited by 73
Privacy in Psychiatric Treatment: Threats and Responses
Appelbaum, P. S. (2002) · American Journal of Psychiatry · doi:10.1176/appi.ajp.159.11.1809 · Cited by 71
Rule, A. D., Semret, M. H., Amer, H., Cornell, L. D., Taler, S. J., Lieske, J. C., Melton, L. J., Stegall, M. D., Textor, S. C., Kremers, W. K., et al. (2011) · Mayo Clinic Proceedings · doi:10.4065/mcp.2010.0821 · Cited by 70
Self-citationLong-term Survival of Patients With Anorexia Nervosa: A Population-Based Study in Rochester, Minn
KORNDÖRFER, S. R., Lucas, A. R., Suman, V. J., Crowson, C. S., Krahn, L. E., & Melton, L. J. (2003) · Mayo Clinic Proceedings · doi:10.4065/78.3.278 · Cited by 71
Self-citationMedical Privacy and Medical Research — Judging the New Federal Regulations
Annas, G. J. (2002) · New England Journal of Medicine · doi:10.1056/nejm200201173460320 · Cited by 70
Sharing patient data: competing demands of privacy, trust and research in primary care.
Stone, M. A., Redsell, S. A., Ling, J. T., & Hay, A. D. (2005) · Europe PMC (PubMed Central) · Cited by 69
Evaluating Common De-Identification Heuristics for Personal Health Information
Emam, K. E., Jabbouri, S., Sams, S., Drouet, Y., & Power, M. (2006) · Journal of Medical Internet Research · doi:10.2196/jmir.8.4.e28 · Cited by 69
Risk of fracture in ulcerative colitis: a population-based study from Olmsted county, Minnesota
Loftus, E. V., Achenbach, S. J., Sandborn, W. J., Tremaine, W. J., Oberg, A. L., & Melton, L. J. (2003) · Clinical Gastroenterology and Hepatology · doi:10.1016/s1542-3565(03)00185-x · Cited by 67
Self-citationClinical characteristics of potential kidney donors with asymptomatic kidney stones
Lorenz, E. C., Lieske, J. C., Vrtiska, T. J., Krambeck, A. E., Li, X., Bergstralh, E. J., Melton, L. J., & Rule, A. D. (2011) · Nephrology Dialysis Transplantation · doi:10.1093/ndt/gfq769 · Cited by 67
Self-citationDyck, P. J. B., Dyck, P. J. B., Klein, C. J., & Weigand, S. D. (2007) · Muscle & Nerve · doi:10.1002/mus.20846 · Cited by 65
Metadata
- Authors
- Melton, L. J.
- Affiliations
- Mayo Clinic (US)
- Corresponding author
- Melton, L. Joseph
- Venue
- New England Journal of Medicine
- Publisher
- Massachusetts Medical Society
- Published
- 1997-11-13
- Volume
- 337
- Issue
- 20
- Pages
- 1466-1470
- ISSN
- 0028-4793 (ISSN-L)
- 1533-4406
- OpenAlex
- W2324682309
- Cited by
- 245
- References
- 27
- Citations by year
- 2025: 1 · 2024: 1 · 2023: 1 · 2022: 2 · 2021: 2 · 2020: 4 · 2019: 3 · 2018: 6 · 2017: 7 · 2016: 3 · 2015: 7 · 2014: 6 · 2013: 11 · 2012: 16
- FWCI
- 26.08
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- New England Journal of Medicine (publishedVersion)
- PubMed (publishedVersion)
- DigitalGeorgetown (Georgetown University Library) (submittedVersion)
- Funders
- National Institute of Arthritis and Musculoskeletal and Skin Diseases (R01AR030582, AR30582)
- Topics
- Health Sciences › Health Professions › Health Information Management › Thoreau and American Literature
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Health Sciences › Health Professions › Health Information Management › Medical Coding and Health Information
- Keywords
- medical records confidentiality, privacy law, federal legislation, patient-oriented research, personal identifiers
- MeSH terms
- Confidentiality, Europe, Hospitals, Group Practice, Humans, Medical Records, Minnesota, Research, Research Design, Social Control, Formal, Social Justice, Selection Bias, Risk Assessment, Privacy, Personal Autonomy, Disclosure, Government Regulation, Research Subjects, Biomedical Research, History, 20th Century
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Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
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