Patient perspectives on medical confidentiality

OBJECTIVE: To lay the groundwork for a better understanding of patient views on medical confidentiality.DESIGN: Studies were found by searching MEDLINE, BIOETHICSLINE, and selected bibliographies. Articles concerning physician perspectives or implications of legal and administrative regulations were excluded. Only peer-reviewed journal articles reporting original research on patients’ confidentiality views and conduct were included.MAIN RESULTS: Many patients are unaware of or misunderstand their legal or ethical right to medical confidentiality protections, which leads them to both over- and underestimate confidentiality protections. The possibility that medical information might be revealed, intentionally or not, to acquaintances in a clinic or other social community troubles patients as much as information release to insurers or employers. A significant minority of patients distrust confidentiality protections, leading some to report that they delay or forgo medical care. If doubtful that confidentiality will be upheld, patients will act independently to protect information.CONCLUSIONS: Our review found a wider variety of understandings and beliefs about medical confidentiality among patients than are often indicated in the writings of practitioners or legal experts. As medical confidentiality regulations evolve, these differences need to be recognized and accounted for in interactions between practitioners and patients.

[1]  J. Spencer,et al.  Consent and confidentiality in teaching in general practice: survey of patients' views on presence of students , 1997, BMJ.

[2]  A. Als,et al.  The desk-top computer as a magic box: patterns of behaviour connected with the desk-top computer; GPs' and patients' perceptions. , 1997, Family practice.

[3]  I. Hertz-Picciotto,et al.  HIV test-seeking before and after the restriction of anonymous testing in North Carolina. , 1996, American Journal of Public Health.

[4]  T. Sellers,et al.  Notification of a family history of breast cancer: issues of privacy and confidentiality. , 1996, American journal of medical genetics.

[5]  M. Osler,et al.  Alcohol policy in the Nordic countries , 1997, BMJ.

[6]  B. Lo,et al.  Many people who seek anonymous HIV-antibody testing would avoid it under other circumstances. , 1990, AIDS.

[7]  S. Liaw,et al.  Patient and general practitioner perceptions of patient-held health records. , 1993, Family practice.

[8]  S. Ornstein,et al.  Patient perspectives on computer-based medical records. , 1994, The Journal of family practice.

[9]  S. Alpert,et al.  Shared expectations for protection of identifiable health care information , 2001, Journal of General Internal Medicine.

[10]  George Brown,et al.  Computers in the surgery. The patient's view. , 1984 .

[11]  A. Williams,et al.  Changes in intention to donate blood under a hypothetical condition of reduced confidentiality , 1993, Transfusion.

[12]  R. Petchey,et al.  The last resort would be to go to the GP'. Understanding the perceptions and use of general practitioner services among people with HIV/AIDS. , 2000, Social science & medicine.

[13]  D. Osmond,et al.  Name-Based Surveillance and Public Health Interventions for Persons with HIV Infection , 1999, Annals of Internal Medicine.

[14]  B. Blau,et al.  The influence of confidentiality conditions on self-disclosure of early adolescents. , 1983, Professional psychology, research and practice.

[15]  J. Benkendorf,et al.  Patients' attitudes about autonomy and confidentiality in genetic testing for breast-ovarian cancer susceptibility. , 1997, American journal of medical genetics.

[16]  D. Bowen,et al.  Attitudes and interest in genetic testing for breast and ovarian cancer susceptibility in diverse groups of women in western Washington. , 1999, Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology.

[17]  D. Whitcomb,et al.  Motivations and concerns of patients with access to genetic testing for hereditary pancreatitis. , 2001 .

[18]  G. Marks,et al.  The prevalence of patient disclosure of HIV infection to doctors. , 1995, American journal of public health.

[19]  C. E. Rosen Why clients relinquish their rights to privacy under sign-away pressures. , 1977, Professional psychology.

[20]  R. Hingson,et al.  A survey of attitudes, knowledge, and behavior related to HIV testing of adolescents and young adults enrolled in alcohol and drug treatment. , 1993, Journal of Adolescent Health.

[21]  G. Woody,et al.  Attitudes toward mandatory human immunodeficiency virus testing and contact tracing. A survey of intravenous drug users in treatment. , 1992, Journal of substance abuse treatment.

[22]  J. Hoch,et al.  Assessment of health needs and willingness to utilize health care resources of adolescents in a suburban population. , 1983, The Journal of pediatrics.

[23]  T. Cheng,et al.  Confidentiality in Health Care: A Survey of Knowledge, Perceptions, and Attitudes Among High School Students , 1993 .

[24]  J. Klein,et al.  Adolescents' access to care: teenagers' self-reported use of services and perceived access to confidential care. , 1998, Archives of pediatrics & adolescent medicine.

[25]  Jeffrey L. Jones,et al.  Comparison of Individuals Receiving Anonymous and Confidential Testing for HIV , 1994, Southern medical journal.

[26]  B. Halpern-Felsher,et al.  Influence of physician confidentiality assurances on adolescents' willingness to disclose information and seek future health care. A randomized controlled trial. , 1997, JAMA.

[27]  L. Allen,et al.  Adolescent health care experience of gay, lesbian, and bisexual young adults. , 1998, The Journal of adolescent health : official publication of the Society for Adolescent Medicine.

[28]  P. Appelbaum A "health information infrastructure" and the threat to confidentiality of health records. , 1998, Psychiatric services.

[29]  J M Eisenberg Can you keep a secret? Measuring the performance of those entrusted with personal health information. , 2001, Journal of general internal medicine.

[30]  N Britten,et al.  Confidentiality of medical records: the patient's perspective. , 1995, The British journal of general practice : the journal of the Royal College of General Practitioners.

[31]  M. Orr,et al.  Factors affecting adolescents' use of family planning clinics. , 1982, Family planning perspectives.

[32]  S. Mansfield,et al.  The general practitioner and human immunodeficiency virus infection: an insight into patients' attitudes. , 1989, The Journal of the Royal College of General Practitioners.

[33]  M. Winter,et al.  Factors associated with HIV testing among sexually active adolescents: a Massachusetts survey. , 1997, Pediatrics.

[34]  J. Kulynych,et al.  The effect of the new federal medical-privacy rule on research. , 2002, The New England journal of medicine.

[35]  M. Kochen,et al.  How do patients with HIV perceive their general practitioners? , 1991, BMJ.

[36]  L. Vandecreek,et al.  Client anticipations and preferences for confidentiality of records. , 1987, Journal of counseling psychology.

[37]  J D Kinzie,et al.  Patients' release of medical records: involuntary, uninformed consent? , 1985, Hospital & community psychiatry.

[38]  C Safran,et al.  Computer interview for screening blood donors for risk of HIV transmission. , 1994, M.D. computing : computers in medical practice.

[39]  B. Woodward The computer-based patient record and confidentiality. , 1995, The New England journal of medicine.

[40]  C. Thomas,et al.  Consumers, clinicians and confidentiality. , 1982, Social science & medicine.

[41]  S. Hudd,et al.  Computers in the consultation: the patient's view. , 1994, The British journal of general practice : the journal of the Royal College of General Practitioners.

[42]  H. Scott,et al.  Attitudes and experiences of human immunodeficiency Virus‐positive patients to surgery and surgeons , 1992, The British journal of surgery.

[43]  A. Bar-Cohen,et al.  First family planning visit in school-based clinics. , 1990, The Journal of school health.

[44]  J. Wilson‐Barnett,et al.  HIV and AIDS care: consumers' views on needs and services. , 1995, Journal of advanced nursing.

[45]  T. Kuther,et al.  Referring and reporting research participants at risk: views from urban adolescents. , 1996, Child development.

[46]  P. Newcomb,et al.  Perceived risks of participation in an epidemiologic study. , 1993, IRB.

[47]  G. Gellert,et al.  Anonymous HIV testing: the impact of availability on demand in Arizona. , 1994, American journal of public health.

[48]  B Gerbert,et al.  When asked, patients tell: disclosure of sensitive health-risk behaviors. , 1999, Medical care.

[49]  Marvin R Natowicz,et al.  Individual, family, and societal dimensions of genetic discrimination: A case study analysis , 1996, Science and engineering ethics.

[50]  K. Wilson,et al.  Access to medical care for adolescents: results from the 1997 Commonwealth Fund Survey of the Health of Adolescent Girls. , 1999, The Journal of adolescent health : official publication of the Society for Adolescent Medicine.

[51]  Kathryn M Woods,et al.  Confidentiality: its effect on interviewee behavior. , 1980, Professional psychology.

[52]  P. Appelbaum,et al.  Confidentiality: an empirical test of the utilitarian perspective. , 1984, The Bulletin of the American Academy of Psychiatry and the Law.

[53]  B. Trock,et al.  BRCA1 testing in families with hereditary breast-ovarian cancer. A prospective study of patient decision making and outcomes. , 1996, JAMA.

[54]  M. King AIDS and the general practitioner: views of patients with HIV infection and AIDS. , 1988, BMJ.

[55]  M. Hayden,et al.  Dilemmas of anonymous predictive testing for Huntington disease: privacy vs. optimal care. , 1997, American journal of medical genetics.

[56]  J. McGuire,et al.  The child's conception of confidentiality in the therapeutic relationship. , 1981, Psychotherapy.

[57]  S. Emans,et al.  Confidentiality and adolescents' use of providers for health information and for pelvic examinations. , 2000, Archives of pediatrics & adolescent medicine.

[58]  L. Gostin,et al.  National health information privacy: regulations under the Health Insurance Portability and Accountability Act. , 2001, JAMA.

[59]  L. Fehrs,et al.  TRIAL OF ANONYMOUS VERSUS CONFIDENTIAL HUMAN IMMUNODEFICIENCY VIRUS TESTING , 1988, The Lancet.

[60]  C. Kozma,et al.  Genetic Discrimination: Perspectives of Consumers , 1996, Science.

[61]  K. Phillips The relationship of 1988 state HIV testing policies to previous and planned voluntary use of HIV testing. , 1994, Journal of acquired immune deficiency syndromes.

[62]  B. Hong,et al.  Return rates and partner notification in HIV-positive men seeking anonymous versus confidential antibody testing. , 1999, AIDS patient care and STDs.

[63]  J. Curtis,et al.  HIV screening and counseling for intravenous drug abuse patients. Staff and patient attitudes. , 1989, JAMA.

[64]  M. Siegler,et al.  Sounding Boards. Confidentiality in medicine--a decrepit concept. , 1982, The New England journal of medicine.

[65]  George J Annas,et al.  Medical privacy and medical research--judging the new federal regulations. , 2002, The New England journal of medicine.

[66]  T. F. McDaniel,et al.  Assessing patient willingness to reveal health history information. , 1995, Journal of the American Dental Association.

[67]  R. Bell,et al.  Communication between adolescents and physicians about sexual behavior and risk prevention. , 1996, Archives of pediatrics & adolescent medicine.

[68]  L. Holmberg,et al.  The process of decision-making on abortion: a grounded theory study of young men in Sweden. , 2000, The Journal of adolescent health : official publication of the Society for Adolescent Medicine.

[69]  S. Simmens,et al.  Young adolescents' comfort with discussion about sexual problems with their physician. , 1996, Archives of pediatrics & adolescent medicine.

[70]  B. Peters,et al.  Treatment issues for HIV+ Africans in London. , 1999, Social science & medicine.

[71]  I. Higginson,et al.  Survey of HIV patients' views on confidentiality and non-discrimination policies in general practice , 1996, BMJ.

[72]  R. Brook,et al.  Family planning clinic patients: their usual health care providers, insurance status, and implications for managed care. , 2000, The Journal of adolescent health : official publication of the Society for Adolescent Medicine.

[73]  K. Wilson,et al.  Adolescent girls' and boys' preferences for provider gender and confidentiality in their health care. , 1999, The Journal of adolescent health : official publication of the Society for Adolescent Medicine.

[74]  M. Resnick,et al.  The appropriateness of health services for adolescents: youth's opinions and attitudes. , 1980, Journal of adolescent health care : official publication of the Society for Adolescent Medicine.

[75]  A. Dirksen,et al.  Transmitting genetic risk information in families: attitudes about disclosing the identity of relatives. , 1999, American journal of human genetics.

[76]  C. Thomas,et al.  Psychiatrists, the Public, and Confidentiality , 1982, The Journal of nervous and mental disease.

[77]  J. Catania,et al.  Who plans to be tested for HIV or would get tested if no one could find out the results? , 1995, American journal of preventive medicine.

[78]  E. Morse,et al.  Determinants of subject compliance within an experimental anti-HIV drug protocol. , 1991, Social science & medicine.

[79]  T. Hu,et al.  Who seeks HIV testing? The impact of risk, knowledge, and state regulatory policy on the testing decision. , 1991, Inquiry : a journal of medical care organization, provision and financing.

[80]  B. Yawn,et al.  The impact of requiring patient authorization for use of data in medical records research. , 1998, The Journal of family practice.

[81]  B. Blau,et al.  The adult client's conception of confidentiality in the therapeutic relationship. , 1985 .

[82]  E. Winer,et al.  Genetic testing for susceptibility to breast cancer: findings from women's focus groups. , 1997, Journal of women's health.

[83]  L. Hillier,et al.  'That's the problem with living in a small town': privacy and sexual health issues for young rural people. , 1997, The Australian journal of rural health.

[84]  B Gerbert,et al.  Development and testing of an HIV-risk screening instrument for use in health care settings. , 1998, American journal of preventive medicine.

[85]  Patient consent for release of sensitive information from their medical records: an exploratory study. , 1999, Behavioral sciences & the law.

[86]  T. Peterman,et al.  Eliminating access to anonymous HIV antibody testing in North Carolina: effects on HIV testing and partner notification. , 1997, Journal of acquired immune deficiency syndromes and human retrovirology : official publication of the International Retrovirology Association.

[87]  A. Cnaan,et al.  Adolescents' perceptions of factors affecting their decisions to seek health care. , 1995, JAMA.

[88]  B. Weiss Confidentiality expectations of patients, physicians, and medical students. , 1982, JAMA.

[89]  P. Keyl,et al.  School-based health centers. Students' access, knowledge, and use of services. , 1996, Archives of pediatrics & adolescent medicine.

[90]  C. A. Croft,et al.  A developmental approach to sexuality education: implications for medical practice. , 1993, The Journal of adolescent health : official publication of the Society for Adolescent Medicine.

[91]  T. Timpka,et al.  Acceptability of computerized self-report of alcohol habits: a patient perspective. , 1999, Alcohol and alcoholism.

[92]  E. Smith,et al.  Health care attitudes and experiences during gynecologic care among lesbians and bisexuals. , 1985, American journal of public health.

[93]  C. D. Claiborn,et al.  The client's perspective: ethical judgments and perceptions of therapist practices. , 1994, Professional psychology, research and practice.

[94]  E. Heycock,et al.  Adolescent health services—through their eyes , 1997, Archives of disease in childhood.

[95]  S. Millstein,et al.  DELIVERY OF CONFIDENTIALITY ASSURANCES TO ADOLESCENTS BY PRIMARY CARE PHYSICIANS. † 8 , 1996, Pediatric Research.

[96]  J. Santelli,et al.  Student attitudes toward school-based health centers. , 1996, The Journal of adolescent health : official publication of the Society for Adolescent Medicine.

[97]  A. Demi,et al.  Experiences of disclosure in women infected with HIV. , 1996, Health care for women international.

[98]  G. Evers‐Kiebooms,et al.  Perception of predictive testing for Huntington's disease by young women: preferring uncertainty to certainty? , 1993, Journal of medical genetics.

[99]  H. Bauer,et al.  Patient attitudes about mandatory reporting of domestic violence. Implications for health care professionals. , 1998, The Western journal of medicine.

[100]  K. Jamison,et al.  Pilot study on patients' and spouses' attitudes toward potential genetic testing for bipolar disorder. , 1998, The American journal of psychiatry.

[101]  G. Woody,et al.  Preparations for AIDS vaccine trials. An automated version of the Risk Assessment Battery (RAB): enhancing the assessment of risk behaviors. , 1994, AIDS research and human retroviruses.

[102]  S L Hammar,et al.  Computer-assisted detection and intervention in adolescent high-risk health behaviors. , 1990, The Journal of pediatrics.

[103]  J. Merz,et al.  Assuring adolescents about medical confidentiality. , 1998, JAMA.

[104]  K R Ginsburg,et al.  Factors affecting the decision to seek health care: the voice of adolescents. , 1997, Pediatrics.

[105]  P. Appelbaum,et al.  Confidentiality in psychiatry: a study of the patient's view. , 1983, Hospital & community psychiatry.

[106]  E. Wadsworth,et al.  Attitudes towards and use of general practitioner services among homosexual men with HIV infection or AIDS. , 1992, The British journal of general practice : the journal of the Royal College of General Practitioners.

[107]  M. Bonduelle,et al.  Moral concerns of different types of patients in clinical BRCA1/2 gene mutation testing. , 1999, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[108]  M. Jones,et al.  Do people attending a same day testing clinic discuss their need for a HIV test with their GP? , 1999, The British journal of general practice : the journal of the Royal College of General Practitioners.

[109]  J. Dilley,et al.  Name-based reporting of HIV-positive test results as a deterrent to testing. , 1999, American journal of public health.

[110]  W. Meschino,et al.  Perceptions of Ashkenazi Jewish breast cancer patients on genetic testing for mutations in BRCA1 and BRCA2 , 2000, Clinical genetics.

[111]  J. Rethans,et al.  Do personal computers make doctors less personal? , 1988, British medical journal.

[112]  B. Weiss,et al.  Confidentiality expectations of patients in teaching hospital clinics versus private practice offices. , 1986, Social science & medicine.