Background
Involving patients in decision-making is a good clinical practice and, in some countries, it is imperative for routine patient care [
1‐
4]. This forms part of patient-centred care and is increasingly considered to be the gold standard of medical care by the public, clinicians, and policy makers [
4]. There is growing evidence, suggesting that involving patients in decision-making helps improve their knowledge and healthcare experience and reduce health service utilisation and cost [
5]. The evidence also suggests that patients may modify their health behaviour and status after being involved in decision-making [
5].
Focus on decision-making has led to the development of the shared decision-making (SDM) model, in which patients and doctors share information and values, and patients play an active role in making healthcare decisions [
6,
7]. However, the concept of SDM is interpreted differently in various social and cultural contexts. For example, a recent review found wide SDM practice and policy variations across 13 countries in the Middle East, Europe, and North and South America [
8]. Thus, implementing SDM remains challenging, even in countries where SDM is officially endorsed by government, such as the United Kingdom and the United States of America [
1,
9,
10]. Practising SDM is even more challenging in countries that have scarce healthcare resources and an overburdened healthcare system, which are common in Asia. Despite these challenges, there is a growing interest in SDM globally in terms of “scope (as a component of patient-centred care) and spread (as a component of healthcare everywhere for everyone)” [
11].
In Asia, there is limited knowledge of how the SDM concept has been, or could be, integrated into existing practice. At a micro level, little is known about the decision-making role preference of patients and physicians. At a macro level, it is uncertain whether the Western model of SDM is transferable to societies where healthcare decisions of individuals are strongly influenced by their families and communities [
12]. Asia is not a homogenous continent; for instance, healthcare decisions of Chinese, Japanese, and Vietnamese people are influenced by diverse concepts of harmony and filial piety, which originate from different religious or moral codes [
13]. In 2005, Charles argued that SDM should not be practised without considering the cultural context, of a clinical consultation [
14]. Studies with ethnic minorities in the West have identified the challenges in practising SDM, particularly in communities where the concept of SDM is foreign or non-existent [
15‐
17].
There is one assumption that people in the East prefer a more clinician-centred healthcare system, though there is a lack of evidence. A recent survey in Japan shows that patients want to be more involved in healthcare decision-making [
18]. Although there are still significant differences between Western and Asian cultures, globalisation and advancement of telecommunication have blurred distinctions significantly over the past two decades. Moreover, the overall improvement in literacy rates and health awareness mean that public health expectations are rising in Asia [
19,
20].
Therefore, it is prudent and timely to review the current research evidence, practices, policies, and laws with respect to SDM in Asia. This article uses Malaysia, a multi-cultural Asian society, to exemplify the existing and emerging issues of SDM in the areas of education, clinical practices, and healthcare policies in Asia.
Malaysia has a population of 28.3 million and comprises three main ethnic groups: Malays (67.4%), Chinese (24.6%), Indians (7.3%), and others (0.7%) [
21]. Malaysia is classified by the United Nations as an upper-middle income nation and has a dual sector (public and private) healthcare system. People pay a nominal fee for public health services, which are often overburdened and have long waiting times. On the other hand, the private health sector charges a fee for services and people can choose the hospital, clinic, and healthcare professionals. A multi-cultural society and a dual-sector health system in Malaysia provide an opportunity to study Asian patients’ involvement in decision-making, using the SDM concept to analyse the structures that form decision-making practice and policy.
Methods
The authors met in July 2011 and came to consensus on five key areas, which reflect the condition of patient involvement in the Malaysian healthcare system. The five categories reviewed were (1) clinical training and education, (2) research, (3) patient information and support, (4) laws and regulations, and (5) health policies.
Study design
This study comprised of an environmental scan followed by group consensus methods. In the environmental scan, four sources were used to determine the status of patient involvement in Malaysia. The research group then met to discuss the findings and formulate strategies for increasing SDM in Malaysia.
Sources of data
As the study covers a wide range of objectives, a range of data sources were used to determine the status of patient involvement in decision making in Malaysia. These sources include (1) academicians from main public universities in Malaysia; (2) databases searched for literature review; (3) patient support groups and review of governmental and non-governmental web sites on health information for patients; and (4) Malaysian laws and health policies.
Identification of eligible material
The study aimed to include any data or information on the following key areas: SDM training and education; research and clinical practice of SDM; patient information and support; legislations and policies on or related to SDM.
The following methods were used to collect data from the four sources: (1) an online survey with academicians from main public universities in Malaysia; (2) a comprehensive literature review of patient involvement in decision making; (3) an online survey of patient support groups and review of governmental and non-governmental web sites on health information for patients; and (4) a document review of Malaysian laws and health policies.
The online survey on clinical training and education in SDM
We wrote emails to 15 academicians in eight most established public (n = 6) and private medical schools (n = 2) to seek information on training and education. The participants were selected based on their active involvement in undergraduate and postgraduate teaching in their institutions. The participants were asked to provide information on whether the patient involvement and SDM were included in the medical curriculum and, if so, to what extent they were being implemented in practice. Descriptive data using simple frequency count was used to capture the extent to which SDM was incorporated into the medical curriculum.
A comprehensive literature review on research and practice of SDM
We searched PubMed, CINAHL, and MyJurnal (a database of Malaysian publications) to identify SDM-related publications up to March 2013. Our search strategies were as follows:
-
PubMed: “(patient-centred care OR decision-making OR shared decision-making OR patient participation) AND (Malaysia)” and “patient preference [MeSH] AND Malaysia” (n = 162)
-
CINAHL: “(patient-centred care OR shared decision-making OR decision-making OR patient participation) AND (Malaysia)” (n = 105)
-
MyJurnal “patient” (n = 995).
Both qualitative and quantitative studies were included in the review. Published articles which met the following criteria were considered for inclusion: qualitative or quantitative studies which collected original data; performed in a healthcare setting; published in English; and those that reported how patients were involved in medical decision-making. Studies that reported patient beliefs and levels of knowledge were excluded. Only studies published as full text articles were included in the review. Review articles were also excluded as they did not report any original data. Duplicates and non-relevant references were removed. One of the researchers identified the relevant articles which were reviewed, extracted and synthesised.
Online survey of patient support group and review of official websites for patient health information
We sought information regarding patient involvement in decision-making from four established patient support groups for: diabetes, systemic lupus erythematosus, drug users, and HIV infection. These groups were chosen as they were the few most established support groups in Malaysia. We gathered information from these groups by conducting an informal email survey, enquiring about existing programmes for patient decision support from both healthcare professionals and peers. For patient information and support, we systematically searched the official web sites of the Ministry of Health [
22], main public and private medical centres, and healthcare-related non-government organisations. The amount and quality of patient information were appraised according to: the scope of health topics covered by the website; language available (English, Malay, Mandarin, Tamil); user-friendliness (readability); and patient involvement in the development of the health depository.
Document review of the laws and policies on SDM
For standards and policies, we reviewed legislations and policies enacted by the Malaysian Medical Council, which is the official body for medical policy, legislation, and regulation in Malaysia. The relevant sections which described patient involvement were extracted and described in the results.
Data analysis
Simple descriptive analysis was use to describe the data collected from the various sources.
Group consensus methods
The group corresponded via email to discuss and compile the findings of the environmental scan. Based on the findings, a strategy to increase awareness and implement SDM in Malaysia was formulated (Table
1).
Table 1
Proposed strategy to increase awareness and implement SDM in Malaysia
1
|
Education
| ● Incorporating teaching of SDM into undergraduate curriculum |
○ General communication and consultation skills |
○ Risk communication |
○ Evidence-based medicine |
● Incorporating a more structured SDM teaching into postgraduate curriculum |
○ Communication and consultation skills |
○ Emphasis on specific areas requiring informed consent such as surgeries, chemotherapy, screening |
○ Assessment of trainees competency in SDM |
● Incorporating SDM training into continuing professional development, including workshops on SDM and how to use patient decision aids |
2
|
Clinical practice
| ● Incorporating SDM in clinical practice guidelines |
● Advocate the use of patient decision aids or other decision support tools in patient care |
● Patient involvement in decision making as a quality indicator |
● Payment/reimbursement for practices which implement SDM or use decision aids |
3
|
Research
| ● Baseline research on patient involvement in decision making at the national level |
● Exploratory studies on the factors influencing decision making in a multi-cultural and multi-lingual context |
● Developing and evaluating decision support interventions to help patients make informed decisions |
● Develop and evaluate interventions to incorporate SDM in routine care |
4
|
Policy and law
| ● Malaysian Medical Council should consider developing a national healthcare policy on SDM |
● The Ministry of Health should improve on the existing patient health information system to make the content more accurate, user-friendly and accessible to the public |
| | ● Public health campaigns should target at empowering people to be more involved in their health care and making decisions about their health care |
Discussion
This study identified the gap in the research, practice, policies and laws related to SDM in Malaysia. The findings from the limited research studies on SDM revealed a low health literacy rate among patients, which may be attributed to, or compounded by, inadequate health information. Medical practitioners still play a paternalistic role in making healthcare decisions for patients and they do not involve patients in decision-making. It is also noted that these studies involved patients of extreme ages (children and elderly) as well as those with life-limiting illnesses. There is a lack of data on how adult patients are involved in making diagnostic or treatment decisions in various clinical settings. Most studies looked at SDM from the perspective of healthcare professionals. None of the studies looked at how patients prefer to be involved in decision-making. In a cross-sectional study involving patients from 11 European countries, there was a significant difference between what decisional roles patients wanted to have and how they were involved in decision-making in the actual clinical encounter [
5]. Therefore, future studies should look at patients’ preferred roles and their healthcare experiences in decision-making. This will provide a definitive answer to the question of how Asian patients prefer to be involved in healthcare decision-making.
There was an increasing interest in the development, evaluation, and implementation of SDM in clinical practice and undergraduate and postgraduate curricula. However, efforts were fragmented and not ideal. Teaching and learning of SDM are essential in cultivating a patient-centred approach to healthcare and should be an integral part of the medical curriculum across all disciplines.
In addition, the practice of SDM is complicated by the cultural and language diversity in Malaysia. Doctors not only have to understand patients’ personal and cultural values, but also have to communicate in a language that may not be their mother tongue. Risk communication, negotiation, and achieving agreement require high-level communication skills and demand high language proficiency. Moreover, the public–private dual system results in practice variations. Both factors make the implementation of SDM a challenging task. Future research should focus on effective ways to improve cross-cultural communication and consultations across the two sectors. Interventions to improve SDM, such as patient decision aids, may play a role in reducing practice variations.
Health literacy remains low in Malaysia, which could contribute to the lack of patient involvement in decision-making [
29]. Studies have found that improving health literacy empowers patients to play a more active role in managing their health [
20,
50]. Patients who know about their health problems and respective treatments are more likely to be involved in making healthcare decisions [
51‐
53]. The quality of local health information is generally poor and this is compounded by the lack of translation into common languages. This poses a significant barrier to increasing health awareness and improving health literacy. Government organisations, non-government organisations such as patient and professional bodies, and academic institutions should work together to improve the quality of, and access to, patient information.
Although SDM practice is endorsed by the Malaysian Medical Council, its implementation remains challenging. This requires the council to work closely with the stakeholders, namely the Ministry of Health, professional bodies, patient support agencies and researchers, to develop a strategy to increase the awareness and the implementation of SDM in Malaysia. SDM should be incorporated in the policies to drive changes within the healthcare system. An example is the Washington State Legislation that approved the use of decision aids and SDM when provided with treatment choices [
54]. Currently, there is no health policy in Malaysia that specifically addresses the issues related to SDM. National clinical practice guidelines suggest only the involvement of patients in making medically informed decisions. The council should consider the experiences of countries that have existing healthcare policies on SDM, such as the United States of America, Germany, the United Kingdom, and the Netherlands, as well as that of established SDM institutions and bodies, such as the International Patient Decision Aid Standards Collaboration [
55], the Health Foundation [
56], and the Foundation for Informed Medical Decision Making [
57].
There are limitations in this study. Firstly, limited data sources have been used in this study, which comprise mostly secondary data such as literature and Web pages. We did not consider grey literature such as reports and dissertations for this study. Secondly, our results on SDM training and education are based on a convenience sample, which comprised lecturers in the primary care medicine departments only and not in other disciplines.
Competing interests
The authors declare that they have no competing interests.
Authors’ contributions
NCJ led the study, compiled and wrote the final manuscript. JPE, PYL, BHC, and SFT collected data on the medical syllabus and training. PYL reviewed official Web sites of government, non-governmental organisations and private healthcare facilities for public information on SDM. YKL conducted the literature review on SDM and patient involvement in Malaysia. ZII reviewed legislation related to SDM and patient involvement. NSH reviewed policies related to SDM and patient involvement. BHC conducted e-mail correspondence with national patient bodies to enquire about patient involvement and support. All authors read and approved the final manuscript.