Ziauddin University, an ISARIC Member network, brought together patient and public engagement experts, healthcare professionals and patient advocates during a summit held in Karachi, Pakistan on August 17, 2024.
The conference provided a platform to discuss PPIE challenges and opportunities in Pakistan’s research landscape, and was hosted by the Critical Care Medicine Research Group, Pakistan’s first ever PPIE group to support clinical trials. The group is headed by Dr Madiha Hashmi, who leads the ISARIC Hub based in Pakistan.
During the event, panellists and speakers discussed collaboration between researchers and the wider community as an essential step in shaping the future of health research in Pakistan, with patients, researchers, ethicists and clinicians sharing their local and international experiences.
Arishay Hussaini, a researcher in the Critical Care Medicine Research Group, said: “The summit proved that with determination and trust in public partners, we can make a lasting impact. It reaffirmed my passion for making research relevant and meaningful to our community.”
Timo Tolppa, Coordinator for the PPIE group at Ziauddin University, said: “After a year of pioneering PPIE in Pakistan, the summit was our opportunity to share our experience, encourage others to get involved and start building a community of PPIE practitioners. Encouragingly, some researchers have already expressed interest in setting up their own public group! Our hope is that PPIE becomes the norm, not the exception, in health research in Pakistan.”
Professor Nikhat Ahmed, Public Coordinator for the PPIE group and Adjunct Professor CCRG (Critical Care Research Group) at Ziauddin University, remarked: “This event set the stage for transformative dialogue on advancing healthcare research to enhance public involvement in trials across Pakistan, strengthening the commitment to foster collaboration that leads to meaningful change.”
The presenters included Dr Ashleigh Cheyne, Public Engagement Officer based in the ISARIC’s Global Support Centre. She shared PPIE experiences from the PLATINUM trial, highlighting how public involvement was instrumental in shaping the treatment plan and improving patient outcomes during the trial.
Around the world, direct involvement of patients in trial design and conduct continues to be limited. This practice is even more limited in low- and middle-income countries (LMICs) and there is not enough knowledge-sharing about setting up PPIE groups in resource-limited contexts from the perspectives of patients, public members and researchers. The establishment of the first patient and public involvement and engagement group to support clinical trials in Pakistan is an important step in ensuring the accessibility, acceptability and relevance of clinical trials for the populations they are intended to serve.
Read more in this publication
Listen to recordings from the conference here
