IN December 2020, Zafarullah Khan Jamali, former prime minister of Pakistan, died. Prior to the verified news of his passing, a rumour circulated on several social and broadcast media that Mr Jamali had passed away while fighting for his life in the ICU. President Arif Alvi tweeted, ‘confirming’ the supposed death. His tweet was picked up in no time by all leading media outlets. The family shared their discomfort and frustration on hearing the rumour that had spread like wildfire during an already stressful time. The president’s tweet was later deleted and replaced with an apology to the family. As these chain of events unravelled, it left many questioning patient confidentiality and dignity in Pakistan.

While many countries strictly regulate patients’ right to privacy and confidentiality, Pakistan’s Ministry of National Health Services Regulations and Coordination has yet to recognise the importance of these rights and enforce a formal statute to safeguard them. The rumour of Mr Jamali’s passing was not the first time that a patient’s medical condition had become public knowledge without verification from a healthcare provider or next of kin. It will certainly not be the last, unless regulatory action is taken at the federal level.

In North American and European countries, confidentiality is one of the primary rights of the patient. For example, in the US, patients’ health information is safeguarded by the Health Insurance Portability and Accountability Act (HIPAA), which is a federal law. The law dictates that the healthcare providers provide an opportunity to patients to permit, prohibit or restrict information that providers can disclose and to whom they can disclose it to. If a patient cannot provide his or her consent due to emergency treatment or incapacity, the provider can only disclose limited information, in the patient’s best interest on the basis of professional judgement. This includes the patient’s name and health condition in general terms, such as ‘good’, ‘fair’, ‘critical’, ‘treated and released’, and ‘treated and transferred’.

The healthcare entity can also disclose this information to notify or assist in the notification of a family member or a personal representative of the individual’s location, general condition or in the event of the patient’s death.

The need of the hour is to safeguard patients’ information.

This law was enacted and implemented carefully, so that it prevented many insurance frauds and thefts through patient’s identifiable information. It did that by establishing federal standards for electronic healthcare transactions. It also safeguards patients’ general medical condition from becoming public knowledge.

Unlike the US, Pakistan does not rely so much on health insurance to improve health accessibility. Furthermore, its healthcare is not heavily regulated in comparison to other sectors of the economy. However, this reality may change in future, as monetary and non-monetary investments are made to bring about healthcare reforms.

For example, the current pandemic boosted telemedicine and online payment methods for tele-consultations. As health systems move towards virtual healthcare, a thorough and holistic regulatory system is the need of the hour to safeguard patient’s health and payment information. Last year, Dr Azra Pechuho, Sindh’s health minister, gave a positive response to the possibility of such legislation being put together. This would be a commendable measure towards healthcare reform and boosting innovative health solutions.

It would be a positive move were such a law to be replicated at the federal level to especially focus on patient confidentiality and bind all healthcare providers, both public and private, to enforce it strictly. We may use HIPAA as a reference and stepping stone, and adapt its contextual nature to our healthcare model and framework. The legislation must empower the doctors and/ or healthcare providers to make a professional call, in the patient’s best interest, on the issue of information disclosure, including the type of information disclosed and who it will be disclosed to.

Providing complete privacy to patients is a part of overall ethical care. Most reputable academic medical centres and teaching hospitals ensure that their staff have such policies encoded in their DNA. However, we still have a long way to go before we can safeguard our patients’ complete confidentiality. As a healthcare communicator, it is deeply disturbing to see a patient’s medical condition becoming public and a subject of sensational news. It is not only disrespectful to the patient’s dignity, but also to the comfort of their loved ones.

The writer is a Fulbright scholar in healthcare management and associate, communications and media relations at the Aga Khan University Hospital. The views expressed are her own.

Published in Dawn, February 2nd, 2021