Abu Bakar: Data Protection In Telehealth Crucial For Health Reform

Former Health DG Dr Abu Bakar Suleiman stresses the importance of data governance, as telehealth encompasses not just personal medical data, but also information on personal behaviour.

KUALA LUMPUR, Sept 21 – Former Health director-general Dr Abu Bakar Suleiman has urged the Ministry of Health (MOH) to ensure personal data protection in telehealth for the Health White Paper.

Dr Abu Bakar, who is also IMU Group chairman, told Health Minister Khairy Jamaluddin at the Health Policy Summit 2022 last month that not only will the MOH be dealing with medical data, but the ministry will also be privy to an entire confluence of personal data following the integration of telehealth in health care.

“Look at the governance of data. This is very important, you know.

“And we also have to look at the ethical issues related to the use of personal data because it is not just going to be personal data on health; it is their whole behaviour, what they do with their life. It is all going to come together,” said Dr Abu Bakar, who spoke as a panelist last August 15 at a panel titled health system resilience at the Health Policy Summit organised by MOH.

Telehealth, sometimes called telemedicine, is the consulting of one’s health care provider via remote or virtual means.

The medical services provided available to the patient via telehealth is dependent on the need for a physical check-up. If a patient does not need to go for a physical check-up, telehealth allows them to be treated for mental health issues, recurring conditions, urgent care issues like colds, coughs and stomach aches, and other medical issues.

In Malaysia, telehealth is not a new concept that came about as a result of Covid, but rather, it has been in the making since the late 1990s with the Telemedicine Blueprint 1997. The main goal of the blueprint was to prepare Malaysia’s health system for its 2020 vision of achieving self-sufficiency and sought to shift the system from curative care to wellness and empowerment of the community.

Dr Abu Bakar, who had been in service during the implantation of the Lifetime Health Record (LHR) and Services and Lifetime Health Plan (LHP) in two hospitals, emphasised the need for both the LHR and the LHP in the future of Malaysian health care as, not only is it in line with the Telemedicine Blueprint, but it is also crucial for the customisation of services offered to individuals and for the constant improvement of the system.

“The initiative to put electronic health records into hospitals and clinics in 1998 to 1999 is very important because it complements the Telehealth Blueprint – on how the lifetime health record and the lifetime health plan can be implemented, so that each individual services will be customised to the needs of each individual,” he told the Health Policy Summit.

“If you look at the vision for health, we don’t mention about hospitals, clinics. The value system of how we will do it: the important objective is – to improve the quality of life all the time. The telemedicine project is supposed to be the technology enabler to realise that vision.”

This need for telehealth services was seconded by Sharuna Verghis, senior lecturer at the Jeffrey Cheah School of Medicine and Health Sciences at Monash University. 

She told the panel: “Digital inclusion is critical not only for access to health care, but also for all the other social determinants of health.”

In the Telehealth Blueprint, the LHP is defined as a network-based lifelong personal health tool to help users plan and manage their health, access health services and record health and illness transactions. 

This was seen to Sharuna as crucial to ensuring “effective integration of services and personal health care management over a lifetime.”

“These plans have the greatest potential to make a significant difference to the health of individuals and communities, because it will foster an approach to health care that focuses on lifelong wellness,” she said.

Therefore, in order to facilitate the above the LHR is utilised to tailor these health plans as well as conduct medical forecasting.

Khairy, in his policy dialogue session on the second day of the Health Policy Summit last August 16, addressed the need for LHR and LHP and personal data protection concerns brought up by Dr Abu Bakar and other panelists.

The health minister emphasised that it is the individual — “you” — who chooses who to share personal health records with.

“I am a firm believer in technology,” Khairy told the Health Policy Summit. “And I know there are concerns from the last panel about trust, about data privacy of MySejahtera.” 

The government has yet to address issues surrounding data privacy and ownership of the MySejahtera mobile app, initially created as a Covid-19 contact tracing app before MOH expanded its use to non-Covid functions, like child immunisation records and organ donation pledges.

“But what Covid has done, it’s mainstreaming the use of technology in health in a way that has never been done before. Telehealth has been with us for a long, long time. We know this,” Khairy said.

“Since the 1980s, we’ve been talking about telehealth, but now, because of Covid there was an impetus for us to use it, and now, with 5G and everything that’s taking place within the internet: the things with AI, with big data, the tools are there now.

“So, I do believe that by having this vision of electronic health records that you choose to share. We’re going to give you the choice to share that not the provider, but you carry your health records with you, on you, and you choose to share with primary health care, whether it is private, whether it’s public. And that allows for much better delivery of service at the point of contact for you, which is an enhanced primary health care system.”

Addressing Systematic Inequality And Discrimination

The key challenge that people face is the lack of equity in the distribution of power and resources that leads to “systematic inequality”, which Sharuna described as one of the main barriers to accessing health care.

With regard to disadvantages in resource distribution, Sharuna flagged minimum wage as a critical area that needs to be addressed, “especially with the rising cost of food and other costs.” 

Although the government recently raised the minimum wage via the gazetted Minimum Wages Order 2022, Sharuna states that enforcement of the minimum wage remains critical.

The New Strait Times reported last June that many Malaysians skipped meals, and consumed smaller portions and less nutritious food, often in the form of instant noodles, bread, and biscuits, to stave off hunger that resulted from an inability to afford adequate, nutritious food due to high inflation.

For the indigenous communities of Sabah and Sarawak and the Orang Asli, another disadvantaged group, Sharuna stated there is a body of work by scholars that links issues of land security and access to food, medicine, “and even identity, which one could argue, could be seen as a mental health issue or an issue of mental wellbeing.”

CodeBlue reported in September 2020 that despite Sabah and Sarawak being collectively larger in size than West Malaysia, East Malaysia suffers from a lack of medical centres and staff. It was also reported that out of the 215 rural clinics in Sarawak, 98 clinics do not have a doctor. 

The final major group that finds themselves entangled in the web of discrimination is the physically and mentally disabled, rare disease patients, and people living with HIV, Sharuna said. 

Despite having the means to pay for private medical insurance, Sharuna noted that this broad group of individuals will often find themselves at the mercy of insurers who place “many exclusions” in private medical insurance.

Resilience And Sustainability Key To Successful Health Care System

Dr Khor Swee Kheng, assistant professor at the Saw Swee Hock School of Public Health, National University of Singapore and chief executive director of Angsana Health, emphasised the need for Malaysia to act to reform its health care system.

He said it would take years for Malaysia’s health care system to complete its metamorphosis.

“The ‘when’ is now. The timing is now – because we will need to be able to build bipartisan political support to help these health reforms to continue,” Dr Khor told the Health Policy Summit.

“It’s also in the next 20 years. Experience from other countries will show us that health reforms don’t take place overnight. They need to take place over a 15- to 20-year period.” 

Dr Khor went on to emphasise the need for a Health Reform Commission that will weather any change of governments and ministers for the next 20 years to ensure that the goals of the Health White Paper are achieved.

Health, for the longest time, has been the sole purview of the MOH and other players in the health care industry, Dr Khor noted.

This, however, has to change, he said, as the MOH and Malaysians work toward a more holistic approach to health. 

Dr Khor specifically championed this need for collaboration as he saw it as a way to build a better Malaysia through shared experience.

“Health is a shared responsibility. What do I mean by that? Minister Khairy has mentioned about social determinants of health, which are the conditions in which you live, work, play, grow old, and, at some point, pass away. Therefore there are many representatives from many ministries here today…[and all] are very crucial to support the Ministry of Health and to support each other in creating a better Malaysia.”

It is unclear if Khairy will be able to table the Health White Paper in Parliament by year-end as scheduled, as calls intensify for the 15th general election to be held this year. Opposition politicians have urged Prime Minister Ismail Sabri Yaakob not to dissolve Parliament before Budget 2023 is passed, after its tabling on October 7.

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