Public and consumer groups have been demanding for greater transparency in the handling of confidential health data stored in the newly introduced Malaysian Health Data Warehouse (MyHDW).

The concern was that personal information would be compromised by unscrupulous parties. Muslim Consumers Association of Malaysia chairman Datuk Nadzim Johan said there has to be a mechanism to ensure that the privacy of the information is always intact.

Nadzim called for the explanation of how medical information of patients will be kept private from the Ministry of Health (MOH).

"We have heard promises everywhere, from banks, under the Banking and Financial Institutions Act (Bafia), yet we have received calls from people we do not know," he said, "When it comes to medical information, it is even more critical. Consumers must be given that assurance on how their data will be kept private."

No details on patient data privacy safeguards during launch

Health Minister Datuk Seri Dr S. Subramaniam announced the launch of MyHDW, a central database containing health-related information from both public and private hospitals, aimed at allowing better and more "educated" decisions by healthcare services, and cut wastage on 18 April.

He also assured the public that patients' privacy will be of "utmost priority", adding that sensitive information like personal details will not be accessible, but did not provide details on patient data privacy safeguards then.

The data collection flow as outlined by the MOH would ensure. Source: Ministry of Health, Malaysia
The data collection flow as outlined by the MOH would ensure. Source: Ministry of Health, Malaysia

Health director-general Datuk Dr Noor Hisham Abdullah clarified on 23 April that the data would only relate to health matters and would not disclose any sensitive information such as the patient's name and address.

"The names are all blank (blanked out). It is only the health information that we want, such as the disease and treatment," he explained.

"That is why we call it a health data warehouse ― there is no individual information there. We are not interested in the individual or address," he added.

Patient's medical records will remain in hospitals and would not be shared with any outside parties such as insurance companies, Dr Noor Hisham assured, adding that data sharing is regulated by the ministry's Health Information Centre. Some general health informatics, however, may be made public.

Critics remain unconvinced, while others laud the initiative

Bar Council Human Rights committee co-chairman Andrew Khoo remains unconvinced, publicly questioning who owns the data warehouse and who will have access to the database.

"If cases are entered into the database without the name of the patient, then there is some protection for that person's identity or privacy," he said.

"The main aim should be in re¬source allocation and channelling it according to needs. But will private hospitals agree to share their facilities, and who would pay for that?" he asked. "There are not just questions of privacy but also access to the best available healthcare, which is a human right."

Others such as lecturer Helena Wong, commend the database, but reminded that it needs to be implemented well.

"We need to get the statistics right about certain diseases. The cancer registry, for example, takes too long to be updates, which makes it tough for the ministry and other NGOs to combat the disease," said Wong.

Pharmacist L. Parvathi, 30, echoes Wong, stating that other countries with such a database have good practices such as Taiwan, which makes a random sampling of data from one million patients available for researchers to analyse, but patient data privacy should still be prioritised and made transparent. MIMS

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