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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The current data cannot be generalized to the entire US population because the community studied is predominantly white.
“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-citationLeibson, C. L., Long, K. H., Ransom, J. E., Roberts, R. O., Hass, S. L., Duhig, A. M., Smith, C. Y., Emerson, J. A., Pankratz, V. S., & Petersen, R. C. (2015) · Alzheimer's & Dementia · doi:10.1016/j.jalz.2015.01.007 · Cited by 110 · see citing works
Privacy and Confidentiality of Genetic Information: What Rules for the New Science?
Anderlik, M. R., & Rothstein, M. A. (2001) · Annual Review of Genomics and Human Genetics · doi:10.1146/annurev.genom.2.1.401 · Cited by 110 · see citing works
A Population in Pain: Report from the Olmsted County Health Study
Watkins, E., Wollan, P. C., Melton, L. J., & Yawn, B. P. (2007) · Pain Medicine · doi:10.1111/j.1526-4637.2007.00280.x · Cited by 107 · see citing works
Self-citationĐenić, A., Alexander, M. P., Kaushik, V., Lerman, L. O., Lieske, J. C., Stegall, M. D., Larson, J. J., Kremers, W. K., Vrtiska, T. J., Chakkera, H. A., et al. (2016) · American Journal of Kidney Diseases · doi:10.1053/j.ajkd.2015.12.029 · Cited by 105 · see citing works
Salman, R. A., Vousden, C., & Warlow, C. P. (2005) · BMJ · doi:10.1136/bmj.38624.397569.68 · Cited by 105 · see citing works
Gupta, A. B., Melton, L. J., Petersen, G. M., Timmons, L. J., Vege, S. S., Harmsen, W. S., Diehl, N. N., Zinsmeister, A. R., & Ahlquist, D. A. (2005) · Clinical Gastroenterology and Hepatology · doi:10.1016/s1542-3565(04)00664-0 · Cited by 104 · see citing works
Self-citationChoung, R. S., Shah, N. D., Chitkara, D., Branda, M. E., Van Tilburg, M. A., Whitehead, W. E., Katusic, S. K., Locke, G. R., & Talley, N. J. (2011) · Journal of Pediatric Gastroenterology and Nutrition · doi:10.1097/mpg.0b013e3181e67058 · Cited by 103 · see citing works
The economics of coeliac disease: a population‐based study
Long, K. H., Rubio‐Tapia, A., Wagie, A. E., Melton, L. J., Lahr, B. D., Dyke, C. T. V., & Murray, J. A. (2010) · Alimentary Pharmacology & Therapeutics · doi:10.1111/j.1365-2036.2010.04327.x · Cited by 103 · see citing works
Self-citationTrends in subtrochanteric, diaphyseal, and distal femur fractures, 1984–2007
Ng, A. C., Drake, M. T., Clarke, B. L., Sems, S. A., Atkinson, E. J., Achenbach, S. J., & Melton, L. J. (2011) · Osteoporosis International · doi:10.1007/s00198-011-1777-9 · Cited by 103 · see citing works
Self-citationHealth Insurance Portability Accountability Act (HIPAA) Regulations
O’Herrin, J. K., Fost, N., & Kudsk, K. A. (2004) · Annals of Surgery · doi:10.1097/01.sla.0000128307.98274.dc · Cited by 102 · see citing works
Almallouhi, E., King, K. S., Patel, B., Wi, C., Juhn, Y. J., Murray, J. A., & Absah, I. (2017) · Journal of Pediatric Gastroenterology and Nutrition · doi:10.1097/mpg.0000000000001532 · Cited by 95 · see citing works
Jafri, M., Nordstrom, C. W., Murray, J. A., Dyke, C. T. V., Dierkhising, R., Zinsmeister, A. R., & Melton, L. J. (2007) · Digestive Diseases and Sciences · doi:10.1007/s10620-007-9976-0 · Cited by 95 · see citing works
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 · see citing works
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 · see citing works
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 · see citing works
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 · see citing works
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 · see citing works
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 · see citing works
Self-citationVerity, C. M., Manning, D., & Nicoll, A. (2002) · BMJ · doi:10.1136/bmj.324.7347.1210 · Cited by 83 · see citing works
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 · see citing works
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 · see citing works
Strom, B. L. (2006) · Pharmacoepidemiology · doi:10.1002/9780470059876.ch1 · Cited by 78 · see citing works
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 · see citing works
Faden, R., KASS, N. E., Whicher, D. M., Stewart, W., & Tunis, S. (2013) · Medical Care · doi:10.1097/mlr.0b013e31829b1e4b · Cited by 75 · see citing works
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 · see citing works
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 · see citing works
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 · see citing works
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 · see citing works
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 · see citing works
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 · see citing works
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 70 · see citing works
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 · see citing works
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 · see citing works
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 68 · see citing works
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 · see citing works
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 · see citing works
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 66 · see citing works
- 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
- Physical Sciences › Computer Science › Information Systems › 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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