Su May Liew

Project: Developing patient and public involvement in research in Malaysia

Background

In Malaysia, patients and the public are usually not asked about their views regarding research. This is unfair as the research can affect their care now and in the future.

Patient and public involvement (PPI) in research is a movement that has gained increasing acceptance worldwide and is currently a requirement for many research funding and publication agencies. However, the concept of PPI is still novel in Malaysia and the South East Asian region and there have been some who are resistant to this idea.

Aim and impact

The aim of this project is to explore how we can develop patient and public involvement (PPI) in research in Malaysia.

This study has the potential to be a flagship project demonstrating a culturally-adapted model of patient involvement. Although the framework will be constructed within the Malaysian context, the intention is that it will inform the development of PPI within other countries with similar healthcare research contexts.

Being involved in research, now and in the future, will impact on the quality of the work and align attitudes towards patient empowerment.

As better understanding of the concept of PPI is gained, there will be a shift in attitudes towards the importance of including patients in decision making. This will progress towards shared decision making.

Key developments

• Wrote a section on PPI for an online module on writing a manuscript for publication, which is now being used in training and online workshops.

• Nominated as the Chairperson in charge of the UM Faculty of Medicine Research Carnival which has the theme Patient and Public Involvement in Research, Teaching and Advocacy.

• Asked to lead on PPI/CEI for the Faculty of Medicine, UM, leading on from experience gained during her RESPIRE Fellowship.

• Delivered a plenary talk at the 7th Sabah Medical Research and Scientific Conference on Developing Patient and Public Involvement in Research in Malaysia. Ministry of Health officials and clinicians present, including the Director of the National Clinical Research Centre of Malaysia.

• Led meetings with the Malaysian Ministry of Health and public universities to include patient and public members in a national committee to improve research quality and patient-centred care.

Publications

Patient and public involvement in research: from tokenistic box ticking to valued team members.

Jackson T, Pinnock H, Liew SM, Horne E, Ehrlich E, Fulton O, Worth A, Sheikh A and De Simoni A

BMC Medicine. 2020 Apr; 18:79.

Project data

Download the project Data Management Plan

View project metadata on the Health Data Research Innovation Gateway

About me

I am presently an Associate Professor and Family Medicine Specialist at the Department of Primary Care Medicine, University of Malaya. I am a Senior Fellow of the Centre for Evidence Based Medicine, Oxford University and an Honorary Clinical Epidemiologist for the National Clinical Research Centre, Malaysia.

My career intentions are to develop further as a researcher and leader in the discipline of primary care medicine, especially with a focus towards respiratory diseases. This area has been somewhat neglected in our region and I hope to be able to carry out impactful research that can improve patient care and prevent or control respiratory diseases.

It is my aim that there is true involvement of the patients and public in research.