Establishment of a patient and public involvement and engagement group to support clinical trials in Pakistan: Initial lessons learned

Journal article : Letter

Background: Patient and public involvement and engagement (PPIE) in clinical trials is increasingly recognized as vital for ensuring research relevance and accessibility. Despite its proven benefits, PPIE remains limited, particularly in low- and middle-income countries, and more examples of effective strategies for involvement are needed. This commentary outlines the establishment of a PPIE group for clinical trials in a lower-middle-income country setting with limited research infrastructure. Main Body: We established Pakistan’s first ever PPIE group for clinical trials within a new clinical trials unit at Ziauddin University in Karachi. The objectives of our project were focused on group formation, redesign of informed consent documents for trials, and dissemination of trial results to the public. Recruitment strategies involved referrals from clinicians and existing collaborators as well as engagement at public events, distribution of advertising leaflets and social media posts. Ten potential members were selected based on motivation, commitment and ability to contribute critically, with six members continuing their involvement long-term. An existing tool designed to establish the access needs of public partners was adapted to our project to help us document and account for members’ expectations and support requirements. The process of using the tool enabled deep engagement, clarified roles, and fostered trust between coordinators and group members. Patient and public members gained confidence about the legitimacy of the project and felt more comfortable participating in the first group meeting. Lessons learned emphasize the importance of wide-ranging engagement efforts and transparent discussions about expectations to build effective collaborative relationships. Conclusion: Our experience demonstrates the feasibility of establishing a PPIE group for clinical trials in Pakistan and highlights strong public interest for research involvement. The use of a formal tool to document needs, prior experiences and expectations encouraged relationship-building and helped coordinators make relevant accommodations for members. This account contributes to the growing body of literature on effective PPIE practices, emphasizing the value of tailored support and transparent communication in facilitating meaningful public involvement in clinical trials.

Authors: Tolppa, T; Hussaini, A; Ahmed, N; Dondorp, AM; Farooq, S

• Publication status: Published
• Publisher: BioMed Central
• Journal: Research Involvement and Engagement
• Volume: 10
• Issue: 1
• Article number: 98
• Publication date: 2024-09-27
• Acceptance date: 2024-09-11
• DOI: 10.1186/s40900-024-00635-6
• EISSN: 2056-7529
• Language: English
• Keywords: Public involvement; Clinical trials; Pakistan; Patient engagement; South Asia
• Subtype: Letter