2.25PM: "Blasé" health care workers are too often divulging the confidential HIV status of their patients and broader data sharing within the medical fraternity is also leading to unwanted HIV status disclosures, according to HIV positive people. As a result, the Privacy Commissioner is urging health care workers to reflect on the way they handle personal health information. Half of New Zealanders living with the virus report that their HIV status has been disclosed to someone else, often a friend, without their permission. One in five unwanted disclosures resulting in negative consequences were made by professional health care workers. The finding is contained in HIV Futures NZ2, a comprehensive survey of the lives of people living with HIV and AIDS undertaken by Melbourne's La Trobe University, the NZ AIDS Foundation and NZ HIV Positive people's organisations. Body Positive Auckland, the nation's largest advocacy and support organisation for HIV positive people, says health care professionals have become "too blase" about HIV's effects on people's lives. "We are also concerned about access to records," says BP spokesperson Bruce Kilmister. "District Health Boards around the country are sharing laboratory test results with each other and with general practitioners. Unfortunately privacy is being sacrificed for efficiency." Kilmister cites instances where the company physician of a large business such as an international airline has had access to HIV status of employees, thus restricting overseas employment options. "And some married men have two GPs, a family doctor who handles most health matters for the parents and children, plus a separate doctor for sexual health matters. There are occasions when they definitely wouldn't want the family doctor to know they had taken an HIV test or what the result was," says Kilmister. He says patients can restrict who sees their information, but few people know they can or should do this. Kilmister says disclosure, even by the person with HIV, often leads to marginalisation and ostracism. "People still tend to reject the possibility of any kind of a relationship with an HIV positive person." A just-released British study has found that, if they contracted HIV, almost half of young people would fear their HIV status being known by others. One in seven people said they would terminate a friendship with someone who they learned had the virus. Body Positive's concerns are backed up by gay HIV positive man Jonathan Smith, who was involved in preparing the survey of 261 positive people which was the basis of the HIV Futures report. He describes the breaches of privacy by health care workers and the health system as "disturbing, especially so since they are still happening in 2008," over twenty years into the HIV epidemic amongst gay men. Smith has undertaken to bring the disclosure concerns to the attention of organisations involved in HIV work in the hope that the situation can be improved. Privacy Commissioner Marie Shroff says patients need to be kept "in the loop" about what is happening with their health information. "That is a fundamentally important thing in any case, but perhaps even more so when the health information is sensitive - such as an HIV positive status." Shroff says there will be many instances where a health practitioner must share health information with another practitioner who is also treating that patient to ensure quality of care. It is not always necessary for practitioners to gain patient consent to do this. "However," says Shroff, "I do urge health care workers to remember that the patient is at the centre and to reflect that in the way they handle personal health information. It is a matter of keeping patients informed and maintaining the relationship of trust with the patient." She says health care workers should take a "no surprises" approach. Johnathan Smith is also critical of some media who have reported the HIV Futures results as indicating that "life is good" for HIV positive people, whereas the study shows that people living with HIV face significant difficulties in their lives. He says the 'life is good' message "could be sending the wrong message to many people, communities and organisations, possibly a dangerous message."
Credit: GayNZ.com Daily News staff
First published: Tuesday, 15th April 2008 - 2:20pm