The right to access information and the confidentiality of patients' medical secrets under coronavirus pandemic

With the coronavirus pandemic accelerating around the world, and the number of people infected and ill sharply increasing, most countries face a new reality requiring the investment of enormous amounts of funds regulations that greatly restrict the movement and other freedoms of their residents. Most governments around the world imposed a state of emergency.

This exceptional situation, which is unprecedented, has led to confusion over the right balance between personal privacy and other individual rights on the one hand and surveillance and government control on the other.

 

Right to information

The right to access information is one of the civil and political rights guaranteed by Article 19 of the Universal Declaration of Human Rights. Access to information is critical for groups and individuals to make well-informed decisions, participate in democratic life, monitor the delivery of public services, and promote transparency and accountability—and thus combat corruption.

In many countries, laws regulating the right to information are almost nonexistent. When they are present, they incorporate restrictions in the name of security and protection of morality (broad terms that can be interpreted many different ways) that that in effect reduce freedom of expression and of the press.

The right to access information is also one of the requirements for exercising the right to health:

Government authorities are responsible for achieving the best balance between protection of patients' privacy and public health/national security.

 

  1. Availability: a sufficient quantity of functioning health care facilities, goods and services, as well as programmes for all.
  2. Accessibility: the ability of all constituents to use health facilities, goods and services. Accessibility has four overlapping dimensions: physical, economic (affordability), information and nondiscrimination.
  3. Acceptability: sensitive to ethics, culture and gender. Acceptability requires that health facilities, goods, services and programmes be people-centred and cater to the specific needs of diverse populations in accordance with international standards for confidentiality and informed consent.
  4. Quality: review and approval of facilities, goods and services according to scientific and medical standards. Quality is a key component of universal health coverage and includes experience with as well as the perception of health care.

Governments’ approach to preserving these rights while controlling the spread of the pandemic has varied between transparent disclosure of the reality of infections, to gradual disclosure, to minimizing of the implications, to outright denial. The World Health Organization (WHO) has accused some Middle Eastern governments of sharing insufficient information about COVID-19 infections within their borders. For example, some media in Arab and Western countries are reporting the spread of the virus in Egypt, while Egyptian authorities imposed a kind of media blackout. Similar charges have been levied against many other countries.
 

Some of the most significant concerns are:

  • Lack of clarity and transparency in declaring the extent of the spread of the virus. One example is what happened in Egypt. Egyptian authorities initially denied any cases of infection, while other countries were announcing detention of travelers coming from Egypt who tested positive.
  • Lack of information available in other languages.
  • Lack of websites or specific pages dedicated to the pandemic.
  • No accommodation for people with disabilities, such as blindness, when publishing/sharing information.
  • Absence of a central source of information to assure consistency and accuracy.
  • Failure to provide adequate information, impeding preventive measures.
  • Violation of patient privacy.
  • Unmoderated rumors on social media platforms about patients, their names and the results of their tests.

 

The following policies are recommended to address these shortcomings:

  • Practice transparency and clarity when publishing information.
  • Launch websites and specialized pages on the coronavirus pandemic and provide informational material that is understandable by and accessible to people with disabilities.
  • Make spokespersons available to provide health information to citizens and the media.
  • Hold periodic press conferences to keep people updated.
  • Standardize talking points about the disease to ensure the public is not confused by conflicting information.
  • Share periodic reports on the disease and its spread at appropriate times to help separate facts from the fictions on social media platforms.
  • Stress the importance of the freedom of opinion and expression, while rebutting rumors and false information and protecting the privacy of citizens suspected of being infected.

Patient confidentiality

Patients’ right to confidentiality includes their type of disease or infection, treatment, tests conducted and prognosis. Preserving their patients’ confidentiality is part of the oath taken by all physicians, and the concept is supported in law as well.Government authorities are responsible for achieving the best balance between protection of patients' privacy and public health/national security.
The most common violations of patient confidentiality are:

  • Publication of the names of people infected or suspected to be infected with the novel coronavirus—in some cases, before officially informing the subjects. This is particularly a problem in the Arab world, where notification is carried out informally and leaks are common. This paves the way for bullying, discrimination and other aggressive practices.
  • Publication of photographs of infected people, sometimes without their permission.
  • Publication of details of patients’ movements and social relationships.
  • Monitoring of the movement of those who are infected or those suspected to be infected, along with their contacts, without their awareness. This occurred in Israel, by the Shin Bet security service.

 

Policies to be followed to protect patients:

  • Do not publish the names and pictures of infected people without their prior consent.
  • Avoid publishing the names and photos of infected minors.
  • Allocate to governmental authorities the responsibility for collecting necessary information from infected people about the places they have visited and with whom they socialized, then following up with the latter. This should be done with the individuals’ knowledge.
  • Prohibit and shut down large gatherings.
  • Prevent individuals and non-authorized bodies from circulating information and pictures related to those who are ill or infected or are suspected to be, and hold to account anyone who does so anyway.

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