36_4 Introducing Patient and Public Involvement and Engagement in Health Research to Sri Lanka
Today, the changing society and pressures on health and related services have created a situation, where the research is essential to discover evidence and treatments to cater to patients’ needs and requirements to improve services.
In July 2018, at Sri Lanka Medical Association’s (SLMA) pre-congress workshop, the internationally acclaimed, concept of Patient and Public Involvement and Engagement in Health Research (PPIE), was formally introduced to Sri Lanka by the Institute for Research and Development (IRD).
Great concepts and good practices could be introduced. However, the real challenge is to identify a niche to operate and a working mechanism to sustain the initiative.
IRD proposes two-pronged strategy to implement PPIE.
First and foremost, introducing the concept of PPIE to the senior scientists who are responsible for driving the research agenda as well as granting approval for research proposals as ethical review committee members.
The other strategy is to sensitise patients and public, primarily using mass media.
IRD has successfully networked with ethical review committees of Sri Lankan universities, leading hospitals and other health sector educational institutions.
The response from the ethical review committee members was encouraging and within 2018/2019 IRD has organised three workshops enabling them to share with and gain from global champions in PPIE. The pool of expertise that IRD put together created multiple streams of synergy and ignited live and constructive discussions.
IRD incubates a virtual network which is called IRD PPIE small group, where the participants are encouraged to explore multiple dimensions of PPIE. The group members are from diverse backgrounds which include Law, Human Rights, Disability Studies and Medical Sciences.
During 2018/2019 IRD sensitised Sri Lankan Print and Electronic media to introduce the concept of PPIE and to invite public at large to get involved. IRD has received positive feedback, especially with interactive TV programs. IRD has identified volunteers who are keen and committed to be involved in research.
Still, there are individuals who continue to question, why a researcher should ask patients and their carers to contribute as equal partners in the research endeavour. In fact, when the concept was first introduced in Europe many people were skeptical and inquired–would patients be too emotionally involved? Will they be able to understand the scientific issues? Or, will they be too narrow in their personal interests?
Sri Lanka is no exemption. Some will continue to be skeptical. However, our PPIE experience have proved both our strategies, firstly with Senior Scientists and then with General Public, have tangible impact.
We are confident that Sri Lankan researchers will understand the added value of patient and public involvement which contribute to a brighter world with better health and quality of life for all of us. There would not be research without research participants and why not make them partners instead making them just subject.
(Excerpts from the presentation at Sri Lanka Medical Association’s Pre-Congress Workshop, “Patient and Public Involvement and Engagement in Health and Social Care: Its Role and Relevance in the Research and Implementation Process” held in Colombo on 22nd July 2019)
Manouri Wimalasekera
Coordinator – IRD PPIE Professional Group
