The need to properly share Covid-19 data


Data-sharing should be done ethically and legally, with due respect for confidentiality, individual privacy and community dignity, in order to earn the public’s trust in the process. Photo: THE STAR/ Raja Faisal Hishan

Social media has been in overdrive since the advent of the Covid-19 pandemic.

While factual information has been shared, so has misinformation and disinformation – all of which contributes to the infodemic, in which truth has been a casualty.

The World Health Organization (WHO) stated in a resolution: “An infodemic is an overabundance of information, both online and offline.

“It includes deliberate attempts to disseminate wrong information to undermine the public health response and advance alternative agendas of groups or individuals.

“Mis- and disinformation can be harmful to people’s physical and mental health; increase stigmatisation; threaten precious health gains; and lead to poor observance of public health measures, thus reducing their effectiveness and endangering countries’ ability to stop the pandemic.”

The resolution passed at the World Health Assembly in May (2020), in which Malaysia participated, states: “We call on Member States to develop and implement action plans to manage the infodemic by promoting the timely dissemination of accurate information, based on science and evidence, to all communities, and in particular, high-risk groups; and preventing the spread of and combating mis- and disinformation, while respecting freedom of expression.

“We urge Member States to engage and listen to their communities as they develop their national action plans, and to empower communities to develop solutions and resilience against mis- and disinformation.”

Feeding the rumour mill

The Malaysian public have certainly not been spared the ill-effects of the infodemic.

A recent example is the discovery of more than 1,000 Covid-19 cases in the Damanlela construction cluster in Damansara, Kuala Lumpur.

The public were informed that the cases were found in “Kepong, Titiwangsa, Lembah Pantai, Cheras, Gombak, Kuala Selangor, Petaling, Hulu Langat”.

Such information was of no use to the public who wanted to know which premises had cases in order to make an informed decision on whether to avoid them or otherwise.

Those who frequent the affected premises or who reside in them would want to know whether to take additional precautions and/or to avoid contact with family and friends who are at increased risk of Covid-19.

The Health Ministry’s refusal to provide such information on the grounds of confidentiality raises the question of whether public safety will be protected by such a policy.

The non-identification of such premises can lead to unnecessary rumour-mongering and distress.

Speculation could also lead to the shunning of premises without any positive cases.

The authorities’ message to obtain information from reliable sources is meaningless and raises questions about the ministry’s approach to infodemic management.

The refusal of the ministry to provide Covid-19 data direct to the Selangor government from Oct 1 (2020) onwards because of “unwanted incidents (insiden tidak diingini)” as mentioned by Health Minister Datuk Dr Adham Baba in a written reply in Parliament on Nov 3 (2020), also raises questions.

Silence about the details of these “incidents” and the vague excuses given reflect poor risk communication.

The perception that the decision was tainted with politics has to be addressed.

When health decisions are politicised, it can only lead to harm to public safety.

Improving data-sharing

Data-sharing has to be timely, ethical, accessible, transparent, equitable and fair, with the data meeting certain standards of quality.

Timely data-sharing should be the expected norm in order to extract maximum benefit out of the data.

It should be done in accordance with applicable ethical and legal standards, ensuring beneficence and respect for confidentiality, the privacy of individuals and the dignity of communities.

This is vital to build the trust of the public and other stakeholders.

The data should be shared with as few restrictions – whether technical or legal – as possible.

The process of sharing the data and facilitating access should be clearly explained.

Both data providers and users should have equal access to the data needed, in order to collaborate and collectively deliver benefits to the community.

The provision and use of data must be done in such a way that ensures fair treatment of all parties involved and recognition of their contributions.

The data shared must also be of a certain minimum quality to ensure its utility.

Information about the clinical and other features of confirmed Covid-19 cases should be made available to healthcare professionals and the public, whose involvement is critical to the success or failure of containing the disease.

Public health specialists, doctors and researchers need, among others, information about transmission dynamics, risk factors for infection and testing.

Policymakers need analysis of the measures taken, including its successes and failures, and the economic and health effects of the disease, among others.

Two-way trust

South Korea managed to contain the outbreak there.

In an interview with the BBC on March 15 (2020), its Foreign Minister stated that the “basic principle is openness, transparency and fully keeping the public informed”.

The public and healthcare professionals in Malaysia expect the same of our Health Ministry.

If there are any impediments to data-sharing, the ministry has a duty to inform the public and healthcare professionals.

Data-sharing should never be politicised.

Covid-19 cannot be contained without the involvement of the public and healthcare professionals.

The earlier information is shared, the better the chances of containing the disease.

The SARS-CoV-2 virus can only be contained with science, which means sharing information with everyone is vital.

The maintenance, or even the re-earning, of public trust in such times requires the demonstration of reliability, transparency and reduction of uncertainty by decision-makers and healthcare professionals.

Decision-makers should heed the late US President Abraham Lincoln’s statement: “The people, when rightly and fully trusted, will return the trust.”

Dr Milton Lum is a past president of the Federation of Private Medical Practitioners Associations and the Malaysian Medical Association. For more information, email starhealth@thestar.com.my. The views expressed do not represent that of organisations that the writer is associated with. The information provided is for educational and communication purposes only and it should not be construed as personal medical advice. Information published in this article is not intended to replace, supplant or augment a consultation with a health professional regarding the reader’s own medical care. The Star disclaims all responsibility for any losses, damage to property or personal injury suffered directly or indirectly from reliance on such information.

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