A description of the Ziauddin University Critical Care Research Patient and Public Involvement and Engagement group, which includes a comprehensive set of tools and templates 

A new trials unit at Ziauddin University in Karachi has established Pakistan’s first Patient and Public Involvement and Engagement (PPIE) group for clinical trials. As there are few resources available about how to effectively implement PPIEs and the care with which this exercise was conducted, the learnings garnered by the Critical Care Research Group at Ziauddin University leading the PPIE group are invaluable to the field of community engagement in medical research.

Active participation of patients and publics in the design, implementation, and dissemination of randomized control trials is increasingly acknowledged to both be an ethical imperative and to improve the quality and efficiency of trials. Despite this, direct patient and public involvement in trial design and conduct is extremely limited. As a result, few resources are available on how to effectively set up, for instance, PPIE groups, across the world but especially in low-resource settings. PPIE groups and other engagement models often face challenges of tokenism, recruitment, and the retention of diverse membership, which compromise the meaningfulness and efficacy of the engagement exercise. Tackling such challenges requires operational information and advice. 

The conduct of Pakistan’s first PPIE group demonstrated the feasibility of establishing a PPIE group for clinical trials in low-resource settings and the conducting team found that there was great interest among patients and members of the public to engage in research. The team’s two main learnings were that a lot of energy and sufficient resources need to be invested in very broad engagement to ensure the right kind of recruitment and to ensure that relationship building takes place; and that effective collaborative relationships and addressing of power dynamics requires formally discussing and documenting expectations before the PPIE exercise begins. Ziauddin University’s PPIE group seems to have been successful because a lot of care was taken to address the power imbalances between the team and the PPIE group members – an important criteria in recruitment was the ability of group members to express disagreement with the doctors conducting the exercise. 

Tools and resources:

What is a Clinical Trial (Urdu)

 

What is a Clinical Trial (Pashto)

 

What is a Clinical Trial (Sindhi)