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What the government isn’t telling us about big data in healthcare

APRIL 21 ― The Ministry of Health (MOH) recently launched a system ― the Malaysian Health Data Warehouse (MyHDW) ― that utilises big data analytics in our healthcare.

MyHDW plans to synchronise patient data from public and private clinics and hospitals, including university hospitals and Armed Forces hospitals, as well as data from the National Registration Department (NRD), the Department of Statistics, and other “health-related agencies”.

It was created in collaboration with MIMOS, a technology provider under the Ministry of Science, Technology and Innovation.

According to MOH, MyHDW aims to move the health care sector towards “evidence-based decision making”, besides assisting in making “strategic business decision(s), improve business efficiency, drive revenue growth as well as create new and innovative business model”.

Health Minister Datuk Seri S. Subramaniam reportedly said the first phase of MyHDW, which has already begun, will access the medical histories of 2.5 million patients.

It’s unclear who MOH will share this huge trove of personal medical data with. MOH said Tuesday that it would collaborate with other government agencies, NGOs and the private sector.

Big data in healthcare has plenty of advantages.

It has the potential to predict diseases by picking up early warning signs, so that one can seek simpler and cheaper treatments than if the illness were to be discovered later.

“For example, you’ve complained to your doctor that you’re having trouble losing weight. You’re taking a cholesterol medication. You’ve posted on Facebook that you’re feeling stressed because you’ve separated from your spouse or on LinkedIn that you’re looking for a new job. A big data algorithm would connect the dots and alert your doctor that you’re running a risk of a heart attack. It would recommend immediate medical intervention”, according to a Los Angeles Times October 2016 report on big data in healthcare.

Big data helps in fighting the spread of epidemics, such as in Africa where mobile phone location data could track population movements that in turn predict the spread of the Ebola virus.

Big data can also help determine the best medicine for us and enable researchers to pick the best subjects for clinical trials, besides potentially replacing conventional studies that are too complex and expensive to conduct for rare diseases.

Such data can also be used to identify problems in our healthcare system and to measure the effectiveness of government policies.

Despite all these benefits, privacy is a huge issue with big data in healthcare.

MOH has not spelled out exactly what kind of health data MyHDW will collect from us or who they will share our medical records with. Getting information from the NRD seems to indicate that the medical data MyHDW is seeking will be personally identifiable, rather than anonymous.

They have not even clarified if they will first seek informed consent before accessing patients’ personal data.

Who are these 2.5 million patients that MyHDW intends to first collect data from? Do these people know that the government is seeking access to their medical history?

Who will MOH share our medical information with? Will they be sharing it with insurance companies? If so, will there be insurance premium hikes for people who are considered to be at higher risk of a disease?

What about doctor-patient confidentiality? This is especially pertinent for people with serious illnesses that can subject them to discrimination, like HIV, cancer and mental disorders.

Dr Subramaniam reportedly said data security would be an “utmost priority” and that “sensitive information relating to patients’ privacy and identity” would not be revealed to the public. I should hope not.

However, my beef isn’t just with the possibility of hacking and theft of our personal health data, but the very fact that the government itself wants access to our medical records.

I, for one, do not want the government to have details on the kind of medications I’m allergic to, the illnesses I have had, my blood pressure, weight, sexual history, and a host of other information that only my doctor should be privy to. 

Why were no public consultations conducted before the launch of MyHDW?

The aims of big data in healthcare may be for the common good, but the government should have consulted citizens before trying to take away our individual privacy.

MOH should have, at the very least, tried to convince us of the benefits in collecting our medical information and explained exactly what they’ll do with it before launching a data collection system out of the blue.

The right to privacy may not be enshrined in the Federal Constitution and the government’s intended access to our medical records may not be in violation of the Personal Data Protection Act 2010 that only regulates commercial transactions.

However, privacy is very important to me because I think that the government and big corporations shouldn’t have access to so much personal data that they can use for profit-making or to make discriminatory policies, especially when there are risks of data errors and biases.

Are there also sufficient healthcare data scientists in the government who know how to make sense of the wealth of multi-dimensional data and how to avoid making faulty conclusions?

There are many unanswered questions about MyHDW.

MOH may have good intentions in launching it, but they need to answer all these questions before violating our privacy.

* This is the personal opinion of the columnist.

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