The current state of data availability in Malaysia What is 'Meaningful Access to Information' Ethics behind data usage Future of data in MalaysiaFacebook link: https://www.facebook.com/UNAMalaysia/photos/a.170810396378150/4188235717968911
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Definition of freedom of access to information
Broad based
definition may not cut it, first we have to ask what kind of data information
and who are the dataholders and data seekers, then differential rights to
access can be conferred with.
One might
not be aware, in the contemporary interconnected digitised world we live in,
governments or authorities are not the only entities who hold people’s data,
for-profit firms and research organisations as well. Some might even argue that
certain big firms know more about you than the government or even your mum,
because they travel with you, eat with you, shop with you, read you, know your
heartbeats and sleeping time.
Alright,
for today’s discussion, when we talk about ‘information’, we should basically
group them into 3 categories of data: personal data, raw non-personal data, and
aggregate non-personal data.
So the
question is, on one hand, how much is the freedom of access to information? Is
unconditional open access regime a good thing? If not, what kind of conditions
should be imposed?
To data advocacy
groups especially those who concern about data security or abuse, condition
access usually depends on the following 3 factors:
• The type
of data seeker and the type of data holder from whom access is sought.
• The
specific parts of raw, non-personal data and aggregate non-personal data in
which access
is sought.
• The
purpose (contextual applicability) for which data is sought.
On the
other hand, we need to talk about the dataholders or ownership.
How can
exclusive ownership of data in the hands of a few entities (be it government or
firms) be wrested away for democratising its use and benefit?
The problem
in data is one of assembling ownership to a social optimum to address the
phenomenon of “wasteful underuse”. But at the same time, we probably do not
want an unconditional open access regime.
An
appropriate resource regime for data must preserve the ‘openness of use’, also
promoting ‘accessibility’, that is, the freedom for all economic actors to
meaningfully leverage data for unlocking its value (as well as extending the
thinking on the intellectual commons about the limits of appropriability).
So,
celebrating the Day for Universal Access to Information, I am cautiously
supportive of the idea, especially on the important government public
information. In a democratic system, people do have a right to information, and
there should be mechanisms to hold the power accountable.
The State
of the availability of Malaysia's Healthcare data
Malaysia,
in a broader context, is practising a two-tier healthcare system, where we have
the public sector served largely by the Ministry of Health and to a smaller
extend, the Ministry of Higher Education and Ministry of Defence, and
importantly we have a significant private healthcare sector which took about
half of our national health expenditure.
The
government acts as the regulator in healthcare governance matters, hence by
default and nature of the duty, they collect data information or reports from
all entities registered under them as legal requirements or guided by various
guidelines. Having said that, not all information the authority can seek
especially from the private entities, for example, medical records, and patient
information. Even if there is data information they have collected for
regulation purposes, the health authority may not have the legal rights to
publish or provide non-exclusive access to others. I am a health policy
researcher, I can put a testament to that based on my experience having
difficulties accessing private healthcare data.
OK, let us
talk about the general public health data before we talk about the COVID-19
pandemic data. In Malaysia, health data are usually published by the Ministry
of Health, compiled in a few important annual documents: Health Facts, Health
Indicators, MOH Annual Report, MHNA Health Expenditure Report, National Health
and Morbidity Survey Report. The Department of Statistics Malaysia publishes a
very important annual report called vital statistics which is the most
significant document informing the health insurance companies. For the general
public, this has provided somewhat adequate information to cover areas of one’s
interest. Most data and statistics are provided at the national and state levels,
rarely going down to district levels.
What I see problematic is that medical related data such as the National Cancer
Registry Report is very often 5 years behind, and information about private
hospital care performance and bill charges are not provided in public. Even
simple statistics about bed capacity, bed occupancy rate, inpatient and
outpatient numbers are not provided like the public counterparts.
Often we
hear about household bankruptcy due to overburdening medicine and treatment
bills, but there is no regularly published public information about medicine
prices at the retailed level, and these usually give quite a wide range of
prices.
On the
COVID-19 pandemic, the amount of public data for sharing is increasing by day,
probably due to the intensive public demand and scrutiny. More data becomes
available such as mysejahtera activity data and vaccination data. No doubt,
there will be people have to work on compiling and verifying the accuracy and
publishing the data in numbers, it will also take another groups to do the data
visualisation and analysis to provide meaning beyond just the cold numbers.
Ethical
dilemmas in heading towards an open data approach into the nation’s health
systems and it’s developments
Ethical use
of health-related personal data has to be governed and regulated even if it is
kept within the realm or exclusive ‘ownership’ by a dataholder. It is not just
personal data, but a network of downstream use of raw non-personal data might
have important identification privacy risks linking back to the person , group,
household or community, and this might have negative consequences. Imagine if
the health insurance company gets hold of certain villages are prone to expose
to certain disease risk, or if a financial institution knows certain locality
or groups of people who have lower income and bad debt issue, how can one
ensure the person associated with such non-personal public or private
information is not receiving the discriminating treatment?
To
some among the general public, they demand for the data because they want to be
informed, thinking how to scrutinise and hold the government accountable, and
improve the public policy. To some other commercial entities, they see
information as a wealth-generating asset.
That is the
problem with the dominant individualist approach
-
Non-personal data is treated implicitly and automatically as the private
property of data
processors.
- The
question of the economic claims of citizens in the data value generated from
their
anonymised
personal data or their data footprints in machine-observed data is
completely
sidestepped.
(Citizens
seem to only have the right to be protected from willful/inadvertent
deanonymisation in
the
processing of non-personal data)
Therefore,
the boundaries between common property and private property in data resources
ownership, have to be created and demarcated.
Ownership
is understood not as the simple and non-social relationship between a person
and a thing, but a complex set of legal relations in which individuals are
interdependent and which determines the limits of an individual’s or group’s
freedoms to “use, posses enjoy or transfer” a particular asset. In this case,
we are talking about data information.
With a
normative baseline in ‘freedom of open use’ in data resources, a rights-based
resource ownership regime is counter-proposed, with varying degrees of
differentiated access rights and associated conditionalities for economic
actors across the spectrum.
Dependency
on technological infrastructures and internet access with online learning as
the pandemic exposes further to an already present of “digital divide”
Digital
divide: not only on the hardware, also infrastructure: internet broadband,
& electricity ; also household affordability…
On kids
online learning, also digital devise handling knowledge, since the adults have
to help their children -- must learn and familiar
MySejahtera
app - issues:
On data :
machine-readable x people-readable
Not about
access and availability, but know how to visualise, understand, use, interpret
the data. → meaning, significance of the data → (information)
communication
MOH GitHub
: cold cold numbers
COVIDNOW:
refreshing, data comes alive
Moving
forward, How can government, private institutions and civil society
organisations
ensure that the information they disclose or disseminate
reflects
people’s needs?
Right to
Information Act -- let the demand side voice up (bottom up) and communicate
Community-based
data ownership - alternative collectivist approach
Beware of
global freeflow
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