Privacy Matters — Medical Privacy

Posted by Natasha Vaz at Jul 10, 2012 12:45 PM |
On June 30, 2012, Privacy India in partnership with the Indian Network for People living with HIV/AIDS, Centre for Internet & Society, IDRC, Society in Action Group, with support from London-based Privacy International, held a public discussion on "Medical Privacy" at the Yashwantrao Chavan Academy of Development Administration.

The conversation brought together a cross section of citizens, lawyers, activists, researchers, academia and students.

Participants 1

Medical Privacy in India

He went on to explain that limited financial resources in public hospitals often preclude the separate examination of one patient at a time. “In Government hospitals, large numbers of patients congregate in the doctors office,” he says. Privacy is also related to a patient's financial status and decreases as one goes down the socio-economic ladder.

Additionally, he described the privacy concerns that arise due to infrastructural constraints. India's healthcare infrastructure has not kept up with the development of government health initiatives. For examples, the Janani Suraksha Yojana (JSY) initiative was launched in 2005, under the National Rural Health Mission (NRHM). JSY was implemented with the objective of reducing maternal and neo-natal mortality by promoting institutional delivery among the Poor Pregnant Woman. Financial incentives were provided to mothers. There was a phenomenal increase of institutional delivery. However, there was no proportional increase in infrastructure.

He called for a change in medical education, administration and management, stating, “Privacy protection has to be established as a core value that connects organizational culture. Alarmingly, medical curriculum in India does not have formal component on medical privacy, significant curriculum reforms in undergraduate medical teaching is necessary.

Medical Privacy- Legal Aspects

Referring to the Dr.Tokugha Yepthomi  Vs  Appollo Hospital Enterprises Ltd & Anr. III case, he described the Supreme Court’s verdict on the ‘Right to Life’.

The “Right to life” would positively include the right to be told that a person, with whom she was proposed to be married, was a victim of deadly disease, which was sexually communicable, since right of life includes right to lead a healthy life. Moreover where there is a clash of two fundamental rights, The RIGHT which would advance the public morality or public interest, would alone be enforced through the process of Court.

He concluded by asserting that there is considerable force in the argument that there is a need for a comprehensive legislation to protect the interest of poor patients and ordinary citizens who cannot afford to initiate a protracted legal battle to protect their medical privacy.

Supreme Court views on Medical Negligence

Confidentiality and privacy in medical Settigs vis-a-vis PLHIV

Ms. Nitu Sanadhya, Senior Legal Officer, Lawyers Collective, HIV/ AIDS Unit, stressed the importance of a rights-based approach and integrationist legal response to the HIV epidemic. When legislations or policies discriminate or isolate persons living with HIV, for example, through mandatory testing and breach of confidentiality, it drives the epidemic underground.

Under the RTI Act, A person’s HIV status is confidential and is protected in law and can only be disclosed to a third person in limited circumstances. The RTI Act specifically exempts the disclosure of personal information which is not of public interest; information which would cause an unwarranted invasion of privacy; and information which has been received in a fiduciary capacity. Therefore, The RTI Act 2005 cannot be used to obtain a person’s HIV report.

Privacy in Practice

be upheld. Yet, one sees a constant breach of people’s dignities in the medical system. Some people rationalize this violation of dignity by explaining that in India, doctors are used to people who have nothing and thus, dignity is not important. Yet, he argued, dignity is something that is inherent. The lack of dignity practiced in India's medical system shows a problem with how we are trained. Giving an example of how dignity is breached in India, Dr. Philip referred to two people being treated on the same table. He pointed out that the physical aspects of privacy are non-existent. For example, the WHO recommends five feet between beds, but typically two or three feet exist between hospital beds. Furthermore, there are often no curtains in hospitals. He then moved from physical privacy to information physical. In a hospital information flows in all directions, it is not a controlled environment and the patient does not choose who sees his/her information – the hospital decided. Dr. Philip then talked about training. The health care system encompasses a larger team of people from doctors to sweepers. Training is only given to clinical staff. Thus other aspects such as the Indian culture, infrastructure, and training all impact how privacy is carried out in the medical field.   In conclusion Dr. Philip re-stated that privacy is a byproduct of autonomy and dignity. He noted that offering a patient dignity was a critical step that must be taken by service providers. Closing his presentation, he challenged the audience with the following questions:  Considering how autonomy is not important, how do we reach people with the idea? Since physical privacy is key to other forms of privacy, how do we take it more seriously? What can we do about the medical team's approach to privacy?

Best Practices of Medical Privacy in Various Health Settings

how they can be adopted for the Indian scenario. A few of the principles included collection limitation principle, data quality principle, purpose specification principle, use limitation principle. For example, if health information for treating malaria is collected, than that information should only be used for that purpose.  Closing his presentation, he noted that most of the technologies that we use today for health run on IT, and thus can be used to compromise individual or hospital wide information.

Epidemics and Privacy

The exercise of actions within the Act is not necessarily bereft of infringement of privacy and overt discrimination. Certain diseases, as indeed limitations imposed by the state, have elements of stigma that further confound the fuzziness of this debate.

When an epidemic occurs, the need for privacy in the mind of the individual goes down, as they are concerned solely with receiving treatment. He also pointed out that there are contradictory elements during epidemics. For instance an area might not want to be named as having an outbreak of a disease, but at the same time individuals will line up outside hospitals for treatment, exposing the fact that they have the disease. He also spoke about how steps taken to address epidemics can invade privacy. For example, during the SARS outbreak, it was the practice to put the patient in an infectious disease hospital. This was invasive to personal privacy as it created stigma and discrimination. Closing his presentation he explained how the conventional notions of privacy do not necessary hold in the case of epidemics because it is an emergency outbreak. Thus, protocol is established on a case-to-case basis. Despite this he believes that it is possible and valuable to protect privacy in cases of epidemics.

HIV/ AIDS and Privacy

HIPPA with reference to Applicability to Patient Privacy and Clinical Data Confidentiality in India

Participants 4

Participants 5

Participants 8

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Presentations

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