Health is extremely important and many would rate it as one of the most important aspects of their lives. As such, we need good health data to be aware of risks to our health as well as make judgments about what therapeutic options best suit us.
Laws like the Official Secrets Act, the Printing Presses and Publications Act, and the Malaysian Communications and Multimedia Commission Act allow some politicians and civil servants to inappropriately hide data and bad news instead of tackling problems publicly.
Despite that, we recognise that these laws can be helpful in some situations, because some government data cannot be publicised for legitimate reasons like national security.
However, we argue that Malaysia must treat the data from our health system with much more emphasis on transparency. As the health of the rakyat cannot survive with so much data secrecy, we strongly recommend increasing the data transparency from our health system. For ethical and legal reasons, we refer only to aggregated and anonymised data that cannot identify individual persons. Not only must that data be made available, it must also be high quality, comprehensive and timely.
We believe there are several categories of data that must be released to the public by the Ministry of Health (MOH). The first category is any information that directly concern the health of citizens or public health, for example data during disease outbreaks. Recent examples include the Kuala Koh tragedy or various dengue outbreaks, when the public either did not get the full story at all or got it much later.
When MOH officials withhold information wanting to “prevent panic on behalf of the public”, this is misguided paternalism.
What this does instead is encourage the spread of rumours and false information, creating a vicious circle of mistrust in the authorities and even more panic. We need to start treating the public like mature adults and trust them to make good decisions.
The second category of information to be made transparent is an honest account of the mistakes that are made and the efforts to ensure they aren’t repeated. Relevant examples include the 2016 fire in Hospital Sultanah Aminah and prescribing errors.
Often, information is suppressed by the powers-that be, lending credence to conspiracy theorists and anti-government types. These sorts of behaviour play into the hands of fringe groups like vaccine hesitant parents. What we need instead is a clear statement of the problem, an acknowledgement of failure and the weaknesses in the system, and efforts to improve the system.
Subterfuge only draws attention and energy away from the overall excellent work of the MOH, and distracts from the truly important work of improvement.
Another category of information that will benefit the public is data on health trends, for example births, deaths, disease prevalence and so on. The MOH Annual Reports are excellent resources, but much remains locked away in a data warehouse that is inaccessible to the general public and even to researchers.
Worse, anecdotal evidence suggests that there is a firewall between the Ministries of Health (who run public hospitals) and Education (who run university hospitals and medical faculties). In essence, MOE doctors cannot access the data of MOH hospitals easily, even if they want to do well-intended and crucial research.
The Cabinet must break down this silo if we want stronger population health. We must open MOH’s data warehouse to MOE, professional associations like the Academy of Medicine and Malaysian Medical Association, and the public. This has the potential to help transform the health system as many individuals and organisations can explore, analyse, disaggregate and examine it to find solutions. Using this crowd-sourced data-mining, we can also work out what the data says on health inequities by regions, urban vs rural, socio-economic status and so on, and find more targeted solutions.
A particular note about the transparency of health data concern the data surrounding the human element. The ongoing brouhaha about the numbers of medical students, new doctors, permanent posts, temporary contracts, nurses, specialists and so on are symptomatic of the greater problem of an opaque MOH.
It’s worth noting that the Malaysian Medical Council’s last published report on the number of doctors date back to 2016! How can the public have a reasoned and rational discourse about our human resources for health if we have incomplete and old data? Making this data more transparent will demystify the debate, and win the MOH some admirers for courage and inclusiveness.
Data transparency is synonymous with anti-corruption efforts. Therefore, we believe that the MOH should also be transparent with their financial spending data, especially in its procurement practices.
The Putrajaya-led Approved Products Purchase List (APPL) and hospital-led purchase of non-APPL medicines are two examples of goods procured, and maintenance of ambulance tyres and MRI scanners are examples of services procured. In these examples, the public deserves to know how much was spent on what by whom. The Auditor-General plays an important role in this process of course, but there’s also no substitute for political will by the MOH.
Finally, we believe in an emancipated and independent National Institutes of Health. The Institute for Medical Research, Institute for Health Systems Research and Institute of Public Health are just three examples of excellent research institutes in Malaysia.
However, it is unusual that their research require the approval of the MOH Director-General before publication, even if it’s conducted by MOH staff using MOH data. This is counter to the basic tenets of freedom of information and making research findings accessible to all. It is time to allow for research to be conducted and published freely, provided they have been ethically approved to safeguard patients or persons.
Transparency encourages trust, kills rumours and allows for public partnership with MOH, not to mention its huge implications for disease prevention.
While many nations are increasingly making health data more accessible to the general public, Malaysia has yet to remove the shackles that constrain the valuable data that belongs to us in the first instance.
We urge the MOH to liberate data for the sake of our health. The time for secrecy is over, and this brave new world demands that the rakyat are treated like mature adults.
- This is the personal opinion of the writer or publication and does not necessarily represent the views of CodeBlue.
