Survey of HIV patients' views on confidentiality and non-discrimination policies in general practiceBMJ 1996; 312 doi: https://doi.org/10.1136/bmj.312.7044.1463 (Published 08 June 1996) Cite this as: BMJ 1996;312:1463
- a Department of genitourinary medicine, St Mary's NHS Hospital Trust, London W2 1NY
- b Department of Public Health, Kensington, Chelsea Westminster Commissioning Agency, London W2 6LX
- Accepted 29 February 1996
In Kensington, Chelsea, and Westminster in 1993-4, general practices knew of 761 HIV positive patients but 1186 HIV positive residents consulted HIV services. This discrepancy hinders the establishment of a therapeutic relationship and prevents primary health care teams gaining experience.
Patients may not believe that general practice is secure for confidential information. Therefore as part of a larger questionnaire we asked patients positive for HIV whether in general they were willing to disclose their diagnosis to practice staff, and then if they would be willing for all staff to know their diagnosis if there was a confidentiality or non-discrimination policy displayed at the practice.
Patients, methods, and results
All 1058 surviving HIV patients who attended outpatients departments between October 1992 and March 1994 were approached. We contacted 847 (80%); 170 patients were lost to follow up and 41 were physically unable to respond. There was no difference in risk behaviour between those who could be contacted and those who could not. The questionnaire was completed by 593 men and 69 women (78% of contactable patients, 63% of attenders). Gay men were more likely to respond than other groups (χ2=38.1, df=1, P<0.0001); 85% (563) of responders were white, 7% (46) Black African, 3% (20) Afro-Caribbean, and 2% (13) Asian. Most respondents (519/656 79%) were registered with a general practitioner, 378 of these (76% of responders, 58% of sample) with a general practitioner who knew their diagnosis.
All patients were asked if they objected to practice receptionists, managers, counsellors, or nurses and a different doctor to their usual general practitioner knowing their diagnosis. Most patients (454/625; 73%) would not want one or more staff groups to know; 159 (35%) objected to all five. There was a clear hierarchy of acceptability: 436 (70%) patients objected to receptionists knowing, 301 (48%) to practice managers, 251 (40%) to a different doctor, 231 (37%) to counsellors, and 222 (36%) to practice nurses. A total of 257 out of 373 patients (69%) whose general practitioner knew their diagnosis still objected to some staff knowing.
Patients who objected were asked if they would be happy for all staff to know whether there was “a clearly displayed policy of staff confidentiality” or one of “non-discrimination against patients who are black, gay, drug users, or HIV positive” in the surgery; 415/454 (91%) of patients responded. The non-discrimination policy was more effective: 141 patients (34%, 95% confidence interval 29% to 39%) answering yes to the confidentiality statement and 169 (41%, 36% to 45%) to the non-discrimination policy (table 1). Having a general practitioner who was aware of the patient's HIV status significantly increased the chance of a positive response (χ2=13.7, df=1, P<0.0005 for confidentiality, χ2=6.0, df=1, P<0.05 for non-discrimination); no other characteristics were significant. Reincluding the 171 (27%) patients with no objection led to an increase in disclosure across the sample to 312/586 (53%) with the confidentiality policy or 340 (58%) with the non-discrimination policy.
Non-discrimination policies might facilitate shared care by doubling the number of patients disclosing their diagnosis to staff, and such policies should be evaluated in practice. Where practices restrict registration of drug users (between a quarter and a half of practices in North West Thames do so) this should be explicit. Although confidentiality is already a contractual and professional obligation, patients still perceive a risk in disclosing HIV status; adoption of a confidentiality policy could therefore be used to review a practice's working patterns, including policy on life insurance forms. Either or both types of policy could be required to be displayed in surgeries, or to be placed in practice leaflets, by commissioning agencies.
We thank Paulette Scott for help with research. In memory of Simon Mansfield, whose commitment to primary health care for HIV positive patients underpinned this research.
Funding The survey was funded by Kensington, Chelsea, and Westminster Commissioning Agency from the HIV Primary Care allocation.
Conflict of interest None.