Ziauddin University

Patient & Public Involvement and Engagement (PPIE) ​

About Patient & Public Involvement and Engagement

Patient & Public Involvement and Engagement, or PPIE for short, is all about researchers working together with patients, families, and the public to shape and influence research. This includes deciding what conditions and treatments to study, how research methods could be improved, and what changes should be made as a result of research findings. The main goal of PPIE is to ensure that research is acceptable, relevant, and beneficial to patients and the public.

The PPIE approach is internationally-recognized and increasingly used to improve the quality of research in all areas of health. Our group, based at the Critical Care Research Group, is bringing PPIE to Pakistan to improve the way we conduct clinical trials because we strongly believe in the power of working together with patients.

Our involvement and engagement in clinical trials align with internationally accepted standards, and the core six standards we follow have been adapted from the ‘UK Standards for Public Involvement’ created by the National Institute for Care and Health Research (NIHR) and partner organizations in the United Kingdom.

Welcome Message from the Coordinator Team

“Welcome to Pakistan’s first ever Patient & Public Involvement and Engagement (PPIE) group! We hope you join us in our effort to work together with patients, families, and the public to make our health research more relevant and useful here at Ziauddin University”

Messages from our Collaborators

“Being part of a Patient & Public Involvement and Engagement Group is not only personally fulfilling, but it also plays a crucial role in transforming healthcare for the better. Through active participation, we can drive positive change, amplify the voices of those directly impacted, and create a more patient-centered, equitable, and responsive healthcare system.” 

Mr. Zahyd Shuja
PPIE Member 

“Health research is all about patients, so it makes perfect sense to me that we meaningfully involve patients in all aspects of the clinical trial process. I feel very honoured to get to work with patients as partners and find out from them what diseases we should research and how research should be done.” 

Dr. Arishay Hussaini
Co-lead for the PPIE group

Professor Dr. Nikhat Ahmed Siddiqui (Coordinator)

Professor Nikhat is a neuroscientist, biochemist, and former Dean of Research at Ziauddin University. Her research career spans over 38 years and crosses the entire research spectrum, from laboratory experiments to clinical studies on diseases such as diabetes, dementia, and blindness. She also meaningfully contributes to research ethics, training, policy development, and strategic planning. Beyond conducting scientific research, Prof. Nikhat is passionate about building capacity to enable high-quality and patient-centered research in Pakistan.

Dr. Arishay Hussaini (Coordinator)

Dr. Arishay is a clinical research associate in the Department of Critical Care Medicine at Ziauddin University. She has actively participated in the implementation and conduct of various research projects, including international randomised controlled trials, qualitative and observational studies. Her interests lie in exploring and improving the experiences of study participants. She aims to work with the local population in Karachi to set research priorities and make research findings relevant to Pakistan.

Dr. Timo Tolppa (Coordinator)

Dr. Timo is a Ph.D. candidate based at the University of British Columbia in Canada and has worked as a regional clinical trial coordinator for several international intensive care trials across South Asia, including Malaysia, Nepal, and Pakistan. He is working collaboratively with researchers at Ziauddin University on making clinical trials more relevant for low-resource settings. Dr. Timo is focused on patient engagement, qualitative research, and health equity, and has a personal interest in the use of film to promote health and justice.

Professor Dr. Madiha Hashmi (Senior Project Lead)

Dr. Hashmi is Professor & Chair of the Department of Critical Care Medicine at the Dr. Ziauddin Group of Hospitals and Ziauddin University. She is a physician researcher with extensive experience in all aspects of critical care research; she has acted as the principal investigator for international trials and set up a national intensive care registry in Pakistan (PRICE) to enable data driven quality improvement projects, observational studies, and clinical trials. Dr. Hashmi is focused on building critical care research capacity in Pakistan, which includes establishing and leading this patient and public involvement and engagement group.

Term of Reference English Version
Term of Reference Urdu Version

What is a clinical trial?

Want to learn about clinical trials? Watch this short, animated video in Urdu detailing the purpose of a clinical trial, all the steps involved in a trial journey and the relevance of clinical trials to you, your family and all members of the public. Feel free to send us feedback or questions via email: [email protected]. Conceptualized and created by the team at Azadkhayal and Final Act Animations.

Introduction to our Patient & Public Involvement group.

Watch our Patient & Public Involvement and Engagement (PPIE) group coordinator, Dr Arishay Hussaini, explain the aim and purpose of the group cased at the Clinical Trials Unit of Ziauddin University.

Blog: Pakistan Institute of Living and Learning (PILL)

14-Jan-2025

Dr. Arishay Hussaini wrote a lovely piece for the Pakistan Institute of Living and Learning (PILL), and we’re excited to see it published on their website!
In her article, she talks about the evolving role of Patient and Public Involvement and Engagement (PPIE) in research, and how it’s shifting from passive participation to active collaboration. She highlights the partnership between Ziauddin University and PILL, where shared learning and real community voices are leading to meaningful and inclusive research. Dr. Arishay also reflects on the value of learning from both international experts and local field workers and shows how global and local perspectives can strengthen research in low- and middle-income countries.
Read the full piece now on the PILL website!  

Event: PPIE Group Meeting
05-April-2025

5 April 2025. Our recent team meeting was a productive and energizing session. We finalised current projects (results to be announced soon) planned future projects, and organised details for our upcoming event in Lahore. There was a real sense of unity and teamwork which made the session impactful and motivating. We wrapped up the day with a lovely lunch—an opportunity to connect further and celebrate the progress we’ve made together. We’re excited about what’s ahead and look forward to sharing more updates soon!  

Event: Advisory Groups for Research in India, Pakistan, and Vietnam (Webinar)
27-March-2025

27 March 2025. We were thrilled to be part of a webinar hosted by the MESH Community Engagement Program, which spotlighted how research teams in India, Pakistan, and Vietnam are successfully establishing research advisory groups. Our team was invited to talk about how establishing and maintaining Patient and Public Involvement and Engagement (PPIE) groups can meaningfully include local perspectives—ultimately leading to better-designed and more impactful research. Dr Timo Tolppa expertly chaired the seminar, and Dr Arishay Hussaini delivered a talk on effective strategies for meaningful involvement and engagement. We were also proud to be joined by Zahyd Shuja, a member of our own PPIE group, who offered his reflections and experiences as part of our group. We’re excited to share that the event was a huge success, with over 400 people registering and tuning in live on Zoom! If you missed it, we’d love for you to watch the recording and tell us what you think! 

Announcement: Our Newest Team Member
14-Jan-2025

14 January 2025. We’re so excited to welcome Dr. Maham Jawaid Ahmed to our PPIE team as our newest coordinator! Dr. Maham is a clinical research assistant and study coordinator in the Critical Care Research Group, with experience in conducting a variety of research projects. With an interest in psychiatry and a commitment to making research accessible and meaningful, she’s eager to dive into this role, working on creating materials that connect with diverse communities and help bridge the gap between research and the real world.

When she’s not busy making strides in research, you’ll probably find Dr. Maham exploring new coffee spots, trying out the trendiest restaurants, or obsessively curating her Spotify playlists. She’s also known for her love of pop culture and a knack for discovering the next big binge-worthy show.

We can’t wait to see Dr. Maham’s ideas and creativity in action as she joins the PPIE group—welcome aboard!

Event: PPIE Meeting led by Dr Madiha Hashmi
14-Dec-2024

14 December 2024. Our PPIE group had their first-ever meeting with Dr Madiha Hashmi, our senior project lead. This meeting was an excellent introduction and built upon prior group meetings regarding effective strategies for communicating and disseminating the results of the critical care trial, REMAP-CAP. The global trial saw significant participation from Pakistan, including Ziauddin Hospital, with numerous enrollments during the COVID-19 pandemic, including Ziauddin Hospital. The PPIE group is eager to explore ways to generate awareness and excitement around the dissemination of the trial results and share the lessons learned with the wider community. As ISARIC senior lead and REMAP-CAP’s Principal Investigator in Pakistan, Dr Madiha provided much insight and supported our group’s ideas.

As a next step, the team is focused on tailoring communication materials to resonate with the public target population, ensuring the messaging is clear, engaging, and impactful. It’s an exciting opportunity to bridge research and public engagement, and the group is ready to get to work!

Announcement: Move to CCRG
01-Oct-2024

1 October 2024. We are excited to announce a significant step forward in the growth of our Patient and Public Involvement and Engagement group! Under the visionary leadership of Dr. Madiha Hashmi, our PPIE initiative has officially become part of the Critical Care Research Group (CCRG) at Ziauddin University. Being under the umbrella of the CCRG opens up incredible opportunities for us to expand our work. This means we’re no longer limited to clinical trials but can take a broader, more inclusive approach to critical care research while continuing to work with the Clinical Trials Unit.

What does this mean? It means:

  • More collaboration: We’ll connect with even more researchers, patients, and community members to make sure every voice is heard.
  • Wider focus: We can tackle bigger questions in different research fields.
  • Stronger impact: Our work will continue to prioritize what matters most to patients and their families.

This is an exciting new chapter for us, and we can’t wait to share more as we grow and learn together. We’re just starting!

HCOR Research Institute, São Paolo, Brazil 
18-Oct-2024
18 October 2024. For an online lecture, Drs Timo and Arishay shared the behind-the-scenes story of setting up our PPIE group with the HCOR Research Institute in São Paolo, Brazil. They detailed how it began with an introductory session, starting with 10 members and evolving into a strong group of 6. A key focus was on the unique contextual challenges faced in low- and middle-income countries, from cultural nuances to resource constraints, and how these shaped the group’s approach. Their presentation highlighted how meaningful engagement can thrive when adapted to local realities, paving the way for more inclusive, impactful research and allowing the Brazilian audience to reflect and potentially integrate community engagement for their own research.
International Clinical Trials Methodology Conference 2024, Edinburgh, UK
02-Oct-2024
2-3 October 2024. Our two coordinators, Dr. Timo Tolppa and Dr. Arishay Hussaini, headed to Edinburgh for the International Clinical Trials Methodology Conference to share our work and progress. Dr. Arishay presented a poster showcasing our PPIE evaluation study, highlighting initial findings, offering key recommendations, and detailing the study’s step-by-step process in a visually engaging way. Meanwhile, Dr. Timo delivered a riveting oral presentation to an auditorium packed with experts from across the research community. He delved into the informed consent process for patients, emphasizing the importance of co-design, clear language, and thoughtful execution in obtaining consent. The poster and presentation received enthusiastic responses, marking a significant step forward for our agenda and progress.
ISARIC Members Assembly, Ghana
19-Sept-2024
19 September 2024. One of our coordinators, Dr Timo Tolppa, gave an engaging presentation to the ISARIC members, comprising a global network of researchers and collaborators. He gave a short rundown on the setting up of our PPIE group and its accomplishments, and talked about how our project could play a part in the next phase of ISARIC’s work. Dr Timo also highlighted how our efforts could help other ISARIC hubs in Brazil, Ghana and the Philippines, and kick-start new PPIE groups across South Asia, broadening the initiative’s reach and impact.
MORU Meeting and Presentation, Bangkok, Thailand
11-Sept-2024
11 September 2024. Our team took a trip to Thailand! At the MORU Tropical Health Network Second Community Advisory Board Facilitators Meeting (CAB-NET MEET) held in Bangkok, Thailand, Drs Arishay and Timo presented to an engaging international audience about the developments that we’ve made so far, giving an overview of our timelines, milestones achieved and our priorities. With this presentation, we aimed to connect and network across sites and swap input and advice on running a PPIE group. We also heard about exciting public engagement initiatives in Thailand and Cambodia.
PPIE Summit
17-Aug-2024
17 August 2024. The first-ever PPIE Summit was held at Ziauddin University to promote awareness of patient engagement initiatives and to showcase the spectacular work being done by our PPIE group. With a mixture of online and in-person attendees, including collaborators and PPIE members, the event featured presentations talking about various aspects of PPIE and concluded with a Q&A session with an executive panel comprising of Dr Saeed Hamid (Head of CTU, Aga Khan University Hospital), Dr Zulfiqar (Director ORIC, Ziauudin University), Mr Adnan (PPIE team member), and Dr. Rakhshi Memon (PhD Bioethics and Chair, Ethics and Governance Group, Pakistan Institute of Living and Learning), facilitated by our very own Dr Arishay Hussaini.
Open House
20-May-2024
20 May 2024. To celebrate International Clinical Trials Day, the doors of the Clinical Trials Unit were opened to the public. Local community members had a chance to hear about current clinical trials at Ziauddin University, patient safety in research as well as the role of patient & public involvement and engagement (PPIE) in trials. The event also featured the world-premiere of an animated video in Urdu explaining clinical trials using lay language. Over 100 people attended the Open House event, of whom 80% had never heard about clinical trials. Attendees expressed huge enthusiasm for learning more, supporting local clinical trials and spreading the word about clinical trials to fellow community members.
Informed Consent training
24-Feb-2024
24 February 2024. Our PPIE members successfully completed their Informed Consent training guided by our PPIE coordinators. Since then, they have been meeting weekly to review the public-facing documents of the REMAP-CAP trial at Ziauddin University, to ensure clarity and relevance for our community. Collaborative efforts like these are vital for conducting effective research by emphasizing what is relevant within our context here in Karachi, to the wider research community. Our work highlights the importance of integrating patient and public partners in trial processes!
Intensive Care Network Meeting in India
02-Feb-2024
2 February 2024. The Indian Registry of Intensive Care network invited Dr. Timo Tolppa (PPIE group co-coordinator) to their annual meeting in Chennai to speak about patient and public engagement in research. He shared the lessons learnt from our success at Ziauddin University in starting a patient engagement group at the Clinical Trials Unit. Attendees wanted to know how our group overcame challenges in order to create such a group in a low-resource setting and were inspired to establish their own groups. Our PPIE group has offered our support to create more groups in South Asia as we believe in strengthening the patient voice in research everywhere.
Critical Care Conference in Nepal
08-Dec-2023
8 December 2023. Dr. Timo Tolppa (PPIE group co-coordinator) attended a critical care medicine conference in Nepal and shared our success at Ziauddin University in establishing a patient engagement group at the Clinical Trials Unit. Attendees expressed excitement and interest to learn more about patient and public engagement, with some wanting to establish a similar group in Nepal. Clearly our PPIE group is serving as an example for others in the region, demonstrating that patient engagement is feasible and valuable. As our own work continues, we hope to inspire many others in Pakistan, Nepal and beyond to embark on the rewarding journey of public engagement.
Presentation at the REMAP-CAP Global PPIE Meeting
22-Nov-2023
22 November 2023. Watch Dr Arishay Hussaini’s presentation at the global PPIE meeting of the REMAP-CAP trial where she shared the lessons we have learnt in establishing a public engagement group in a low- and middle-income country. The meeting was attended by researchers from around the world, including Australia, Japan, Ireland and Canada, and attendees discussed ways in which to incorporate the voices of patients from low-resource settings more meaningfully in the design and conduct of REMAP-CAP. Our PPIE group at Ziauddin University was congratulated for overcoming challenges and inspiring others by showing that engagement is possible in all sorts of environments.
Workshop: Research Ethics
11-Nov-2023
11 November 2023. Our PPIE group met at the Center of Biomedical Ethics and Culture (CBEC) at the Sindh Institute of Urology and Transplantation (SIUT) to discuss research ethics. With the addition of our newest member, our “Fellowship of the Willing” was introduced to differences between medical practice and research; trial participants and patients; doctors and researchers. This was the first of two workshops on informed consent processes in clinical trials. As a result of this successful workshop, the group is very excited to bring their voice to the consent processes at Ziauddin University.
Global Acute Care Colloquium in Toronto
06-Oct-2023
6 October 2023. Dr. Timo Tolppa (PPIE group co-coordinator) shared the lessons learnt from setting up the PPIE group at Ziauddin with acute and critical care doctors, practitioners and researchers at an international meeting in Toronto, Canada. Attendees celebrated the success of the PPIE group in Pakistan and expressed a desire to hear more from the patients and the public in Karachi. The meeting also included talks from public representatives and other researchers engaging with patients across the world. There is clear interest internationally to include the patient voice meaningfully in the design and conduct of research, and the PPIE group in Pakistan is contributing to that aim.
First PPIE Group Meeting
16-Sept-2023
16 September 2023. Our PPIE group has held their first-ever meeting! This group of eight inspirational and dedicated members came together to start their exciting work on bringing the patient voice to clinical trials at Ziauddin University. During their first meeting, the group learned about the power of PPIE in clinical trials and discussed the ethical, moral and practical imperatives for meaningfully involving the public in research. The group also set ambitious aims and objectives to transform clinical trials in Pakistan to make them more patient-centered and societally beneficial.
Lecture on Patient and Public Involvement and Engagement for Clinical Trials
01-Jun-2023
1 June 2023. Dr. Timo Tolppa delivered an inspiring lecture to staff and faculty at Ziauddin University on “Patient and Public Involvement and Engagement for Clinical Trials” to introduce the crucial role patients and the public can play in shaping the future of clinical research. Dr Tolppa shared his insights to the ways in which public engagement can lead to more inclusive, societally beneficial and impactful clinical trials. Attendees discussed the opportunities, challenges and future directions of involvement and engagement in Pakistan and at Ziauddin, and left the session empowered to begin the exciting work of fostering collaborative relationships with the community.
Contract Signing Ceremony for the Establishment of the PPIE Group
01-Jun-2023
1 June 2023. A contract signing ceremony was held at Ziauddin University to celebrate the historic establishment of the first-ever Patient & Public Involvement and Engagement Group in a Clinical Trials Unit in Pakistan. This ceremony was a culmination of months of hard work to seek funding, gain approvals, design the project and recruit team members to allow this exciting group to be launched. We
are extremely grateful to Mahidol Oxford Tropical Medicine Research Unit for providing us with funding and for Ziauddin University for enabling us to carry out this work. In attendance at the contract signing ceremony were Dr. Timo Tolppa (co-lead of the project from the University of British Columbia), Dr. Madiha Hashmi (Head of the Department of Critical Care Medicine at Ziauddin University), Dr. Zulfiqar Ali Umrani (Director of the Office of Research, Innovation and Commercialization), Prof. Dr. Syed Irfan Hyder (Vice-Chancellor of Ziauddin University) and Prof. Dr. Abbas Zafar (Dean of the Faculty of Health Sciences at Ziauddin University).

We would love to hear from you!

Join us to learn more about research, help improve healthcare for our patients, and work collaboratively with us to make a difference in how research is conducted at Ziauddin University. Feel free to contact us via phone or email so we can keep you updated on our events, workshops, and opportunities to be involved. We also welcome any suggestions or feedback about our PPIE project.

Email. [email protected]

Phone. +92-3213660201