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Patient and Public Involvement and Engagement (PPIE) is a novel concept to South Asia. Evidence from the United Kingdom demonstrates that the quality of research is better and the likelihood of successful recruitment and implementation of the findings is improved when patients and the public are involved in research. However institutions such as the Health Promotion Unit, Rajarata University of Sri Lanka and the Institute for Research & Development, Colombo (IRD) have been using PPIE in their research for many years, although it had not been labelled PPIE.
Our overall goal through this workshop was to examine if and how the public involvement and engagement work been carried out in Sri Lanka and to establish a stronger of PPIE culture in Sri Lanka. Through which key research gaps burdening the country may be addressed by academics and lay members of the public working together. The aim of this specific workshop was to introduce the concept of PPIE and how PPIE can add value to their research. It was jointly organised by the Sri Lanka Medical Association (SLMA), Institute for Research & Development, Sri Lanka, and Keele University, UK. It was funded by the Medical Research Council, UK though the South Asian Early Development & Research Capacity Building Project which is led by the IRD.
A total of 72 participants with various backgrounds in research attended. Media coverage for the event was done by Sri Lanka Broadcasting Cooperation and Health TV. Resource persons included Prof. Athula Sumathipala, Dr. Diyanath Samarasinghe, Dr. Steven Blackburn and Ms. Adele Higginbottom, Mr. Duminda Guruge, and Dr Kaushalya Jayaweera.
Dr. Blackburn and Ms. Higginbottom are team members the Patient and Public Involvement & Engagement Team of Keele University, UK. Ms. Higginbottom is the PPIE in research projects co-ordinator, and Dr Blackburn is the Lead for PPIE in the clinical trials unit, and the Research Design Service PPIE advisor for the West Midlands. Dr. Samarasinghe is a Psychiatrist who developed a novel community-led methodology which empowered people to address a various issues at community level, and pioneered the initiation of the B.Sc. degree program in Health Promotion in Rajarata University of Sri Lanka. Mr. Duminda Guruge currently reading for a PhD is a Senior Lecturer in Health Promotion at Rajarata University of Sri Lanka guiding and leading many research projects conducted by the Health Promotion Unit. Prof. Athula Sumathipala is the Professor of Psychiatry at Keele University, UK and the Hon. Director of the IRD is an expert in Global Health research and ethics, and has been advocating public involvement in epidemiological. Dr Jayaweera is the Lead Biomedical Research Coordinator at the IRD, and is leading a PPIE group for a research project on adolescent mental health and substance use in Vavuniya.
The workshop was chaired by Prof. Sumathipala and co-chaired by Dr. Sumithra Tissera of the SLMA. The President of the SLMA Dr Ruvaiz Haniffa and Dr. Hasini Banneheke, Hon. Secretary of the SLMA made a brief visit to observe the workshop.
The content of the workshop included the difference between Patients and public engagement as opposed to involvement; patients taking part…. taking part in studies as research subjects. We drew attention to how PPIE could help academics develop new research studies, shape them so they are asking the right questions that patients want answered and ensure their research plans are appropriate taking account of things like burden and acceptability to patients and communities. Methods on engaging the public and establishing new PPIE groups and networks was discussed as well. This workshop provided practical ways to simplify the research journey for patient and public partners whilst supporting them to feel valued, appreciated and equal members of the research team. Examples of PPIE in real world research from Sri Lanka United Kingdom were showcased by the resource persons. The workshop was made to be as interactive as possible, and participants were asked to form groups and discuss and share their thoughts on difficulties and advantages of using PPIE in their research.
The workshop was a complete success, and the participants requested a follow up workshop to be held in the future. Some participants contacted the IRD via email to request future involvement in PPIE related activities. More PPIE workshops will be planned and conducted in the future. The IRD also plans on involving volunteer participants of the workshops in future research projects which will involve PPIE.