Medical, Consumer Groups Update Patient’s Charter To Cover Data Security

MMA, MPS, APHM, and Fomca sign an MOU on the 2023 Patient’s Charter, which outlines patients’ rights and responsibilities, to cover updates in line with digitalisation and AI in health care, particularly data security and privacy, and patient consent.

KUALA LUMPUR, August 29 — Groups representing doctors, pharmacists, private hospitals, and consumers yesterday launched a 2023 update to the Patient’s Charter titled “Health as a Right, Not a Commodity”.  

This year’s update to the 28-year-old Patient’s Charter – which is essential a bill of rights for patients – was signed by the Malaysian Medical Association (MMA), the Malaysian Pharmacists Society (MPS), the Association of Private Hospitals of Malaysia (APHM), and the Federation of Malaysian Consumers Associations (Fomca) at MMA House here yesterday, witnessed by Health Minister Dr Zaliha Mustafa.

Fomca vice president Indrani Thuraisingham said the Patient’s Charter – which was first introduced on August 21, 1955 and published in 1996 – was in need of an update to keep up with the proliferation of digital information and the rise of artificial intelligence, alongside other technological advancements in medicine, especially when it comes to data sharing and patient consent.

“The importance of patients’ right to privacy and having one’s health data protected in terms of security, especially in light of the government’s intention to implement its data sharing policies,” Indrani said at the signing of the joint memorandum of understanding on the 2023 Patient’s Charter yesterday.

“MCMC (Malaysian Communications and Multimedia Commission) has actually come up with its data-sharing policy, while it’s very good in terms of convenience, in terms of easily sharing information, but we also, again, need to see that consumers’ consent — explicit consent — is obtained in times of wanting the access to health data.”

Deputy Health Minister Lukanisman Awang announced last month that the Ministry of Health (MOH) was planning to implement an Electronic Medical Record (EMR) system nationwide through cloud deployment in 2026. 

Lukanisman said that a pilot project is being implemented in Negeri Sembilan and has been implemented since the Sixth Malaysia Plan through the implementation of patient information systems in public hospitals and health clinics, as well as the implementation of various clinical support systems such as the radiology information system, the laboratory information systems and the pharmacy information systems. 

According to Indrani, the Charter is a non-binding document that outlines the rights and expectations of patients when they receive medical care and seeks to recognise health care as a basic human right, irrespective of race, religion, social status, age, gender and economic status.

“It basically spells out the rights and responsibilities in the delivery of health care services to the consumers,” she said.

“Of course, the patient’s dignity, respect, and interest is definitely paramount in this respect. So, the notion of patients’ rights actually reflects a shift towards a more equal relationship between the patient and the health care provider. We do not want consumers who go as patients just to accept everything but to be able to make decisions when requiring health care services.

“The Patient’s Charter can be seen as a precondition to empower people and move towards a health system that is more people-centred. And it provides a foundation for patients to be in control of their own health care delivery process.” 

She also said that FOMCA is dedicated to raising awareness and empowering consumers via the popularisation of the Patient’s Charter. The consumer rights group also hopes to work with all relevant stakeholders in the near future to develop options for accountability on the part of health care providers. 

“As I said, this is not a legal obligation, but we hope that through options for accountability that we come up with certain instruments, perhaps we can monitor, we can share information and ensure that patients actually make decisions. They actually have [the] right to information, and they are satisfied with the health care services that they obtain from the providers. 

“So when the patient’s Charter is fully realised, it will help to achieve a collective vision of health for all in line with the SDG (Sustainable Development Goal) 3 goals that are ensuring healthy lives and promote well being for all at all ages with no one left behind and that’s what we hope.”

The United Nations’ (UN) SDGs are 17 goals that sit at the heart of its 2030 Agenda for Sustainable Development, an agenda which was adopted by all UN member states in 2015. In its third goal — good health and wellbeing — the UN has laid down targets that member states ought to strive towards to achieve the goal of ensuring healthy living and well-being at all ages. 

Apart from the need to adapt to technological advancements, Indrani held that the Charter now includes the need for health care providers to see patients as consumers and the right for patients to make their own decisions. 

“When we say patients as consumers, consumers have a right to choose, right to information, right to make a decision. And I think that’s where we have kind of put it at a higher scale now, that the patient now makes the decision… I think that’s where we have kind of upscaled it to or advanced it to that higher level, where consumers now, as patients, make that decision with the service provider or the healthcare provider.”

When it comes to patients as decision-makers, the Charter stipulates that: 

  1. patients will have the right to a second opinion at any time; 
  2. patients will have the right to know the type of medical examinations that are being conducted and can choose not to proceed with the recommended examination at any point in time; 
  3. patients shall have the right to authorise, in writing, another medical professional to obtain a copy of their medical record; 
  4. patients shall have the right to be treated at the hospital of their choice; 
  5. and patients shall have the right to discharge any health professional and seek the services of another in the case where the patient’s professional refuses to allow another health professional to be called or breaches any other provisions of the Charter. 

The Charter, however, does not only confer rights upon patients. It also confers responsibilities. 

Amongst the things patients are responsible for under the Charter are keeping appointments and informing their health care providers when they are unable to do so; providing accurate and complete information regarding their health and ability to pay for services rendered; and informing the health professional if they are currently consulting under the care of another health care professional. 

APHM president Dr Kuljit Singh said every private hospital in Malaysia has a patient charter as it is mandated by the law and sees the Charter as a guide. 

“We will actually use this as our guide. Most hospitals will probably upgrade their charter using the essence that’s within this book. So I think that will be the way forward,” said Dr Kuljit, during the question and answer session. 

While Dr Kuljit saw it as a guide for hospitals, MMA president Dr Muruga Raj Rajathurai saw the Charter more as a framework for setting expectations for both patients and health care providers. 

“It encapsulates the fundamental principles of patient-centred care, ensuring that individuals receive ethical, respectful, and high-quality treatment. Such a charter acts as a guide for patients to understand their entitlements, ranging from timely access to care and informed decision-making to privacy protection and dignity preservation.”

Dr Zaliha, who witnessed the signing of the memorandum, expressed her support for the Patient’s Charter, calling it a “significant milestone in our nation’s health care landscape.”

“I urge all Malaysians to take the time to familiarise themselves with the contents of the Patient’s Charter. By understanding your rights and responsibilities as patients, you empower yourselves to make informed decisions about your healthcare, leading to better outcomes,” said the health minister.

“None of us can predict when we might need medical care, so it’s crucial to equip ourselves with knowledge about our patient rights. As rightly stated in the Patient’s Charter, it’s not enough to know that patient protection laws exist. Patients need to be fully aware of their actual rights.

“It’s worth highlighting that alongside patient rights, there are also patient responsibilities, as outlined in detail within the Charter. I appreciate the emphasis on this aspect, as patients bear the responsibility to cooperate with health care providers, provide accurate medical history, attend appointments, adhere to prescribed medications, and most importantly, take charge of their own health.”

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