The Webinar Series
White Coats Foundation Presents
Participant Experience in Research Surveys:
An exploration of Local and International Approaches
The Webinar Journey & Purpose
Despite the increased emphasis on involving patients and the public in trial design, there is no systematic or standardised means of capturing participants’ experiences in clinical research. Routinely assessing participant experiences can help provide measurable benchmarks for:
- the ‘participant-centredness’ of current trials
- areas that warrant future attention
- a better understanding of what is needed for participant-centric research
- how to improve recruitment and retention to clinical trials.
WCF acknowledges there are a number of institutions developing and implementing site specific surveys to evaluate the participant experience in research. How do we harmonise efforts to collect data that will help build a national picture on the participant experience in research for the benefit of sites, sponsors and patients?.
The White Coats Foundation Participant Experience in Research Surveys webinar aimed to explore various approaches and strategies for utilising surveys to capture participant experiences in clinical research and a key focus area of the discussion centered on exploring preferences around localised and standardised approaches to survey administration and data collection.
The discussion also looked at the value of surveys as a means to collect data, understand participant experiences, and ensure that feedback is integrated into the clinical trial process to improve participant-centric care.
The content of this report focuses on the valuable insights and viewpoints shared by presenters, panelists and attendees at the webinar conducted on 16 October, 2024.
Our Speakers
Sarah Piplica BHlthSci MPH MMPP
Regulatory, Start-Up and Patient Partnerships Manager
University of the Sunshine Coast | Clinical Trials
About
Sarah is the Regulatory, Startup and Patient Partnerships Manager at University of the Sunshine Coast (UniSC) Clinical Trials Centre in Queensland. In her role, Sarah provides high level strategic advice and guidance in the overall management and compliance of extensive and complex ethics and regulatory processes, and functions as the subject matter expert for consumer and community involvement.
In 2019, Sarah was awarded the Osmond Russell Scholarship from ARCS, for a project that has seen her research and validate a patient co-authored survey to solicit regular and meaningful feedback from clinical trials participants. Sarah is passionate about advocating for patient, participant and carer involvement within the medicines development industries.
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Mana Golsorkhi MPH RNutr
Public Engagement Manager
NIHR Research Delivery Network Coordinating Centre (RDNCC), United Kingdom
About
Mana is the Public Engagement Manager at the National Institute for Health and Care Research (NIHR) Research Delivery Network Coordinating Centre (RDNCC), in the United Kingdom. In this role, she oversees the day-to-day delivery of the Participant in Research Experience Survey (PRES) across the Research Delivery Network, working with NHS Delivery Organisations throughout England. Mana has been involved with PRES since its pilot phase in 2015. A Registered Nutritionist (RNutr) with a Master's in Human Nutrition (Public Health), Mana has also contributed to various academic research projects, including the epic3: National Evidence-Based Guidelines for Preventing Healthcare-Associated Infections in NHS Hospitals in England (2014) as part of previous roles.
Mana is passionate about advocating patient and public voices in clinical research across diverse communities and is dedicated to promoting Continuous Improvement.
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Our Panel
In addition to our speakers, we have valued consumer advocates joining our panel discussion after the presentations.
Dr. Shyamsundar Muthuramalingam (Shyam),
Consumer Advocate
About
Dr. Shyamsundar Muthuramalingam (Shyam), with a Ph.D. in Chemistry, is a kidney transplant recipient and passionate advocate for consumer engagement in healthcare research. Drawing from personal experience with Haemodialysis and kidney disease, Shyam collaborates with leading organizations like ANZDATA, SAHMRI, The George Institute, and Kidney Health Australia. He represents the community voice on the National Clinical Advisory Committee at KHA and the Australian Medical Council, contributing to the accreditation of medical degrees. Shyam's leadership fosters collaboration between researchers and consumers, ensuring that research aligns with patient needs and experiences.
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Sarah Lukeman
Patient Perspective Partner
About
Sarah Lukeman is a cancer survivor, clinical trial participant and experienced health consumer advocate and representative. She trained as a Chemical Engineer, worked in the mining industry, was elected to local government (2016-21), and is a Tai Chi instructor. She lives in regional NSW and advocates for equitable access to healthcare and a just transition for mining communities
Sarah shares her lived experience with several discovery science cancer research teams, including Associate Investigator on grants and co-author on publications. She has been a member of conference organising committees and grant selection panels, most recently for the MRFF. She is the patient representative on many committees covering women’s health, clinical trials and cancer, for local through to national organisations.
Sarah is regularly invited to speak on Consumer Involvement in Research and has presented at conferences for ARCS, SCRS and the Trans-Tasman Radiation Oncology Group (TROG). She joined the CT:IQ Steering Committee and InFORMed project in 2021, and the Beyond the Form project at its inception and recently featured in a Bellberry podcast with other health consumers. She is on the Board of Cancer Council NSW and was on the Executive of Cancer Voices NSW for 6 years.
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Our Facilitators
Elizabeth Wilson
Director of Prime and Partner Sites, IQVIA & Advisory Board Member White Coats Foundation
About
Elizabeth has 25 years’ experience in clinical hospital pharmacy and drug development, specialising in clinical cancer services for paediatric and adult patients. Elizabeth began her career in hospital and retail pharmacy. She worked in clinical development and management roles with Agenix and Progen Pharmaceuticals for 8 years before joining IQVIA.
Elizabeth leads IQVIA’s clinical research relationships with many of ANZ’s leading clinical research organisations and hospitals. The key focus of her role is to engage with site leaders and sponsor organisations to help ensure their clinical development programs deliver new medicines to patients faster with better health outcomes.
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Christine Zahren
Director & Co-Founder WhiteCoats Foundation
About
Christine has a background in nursing with over 25 yrs experience in healthcare. She has worked in various areas of health including aged care, acute care, rehabilitation medicine, dermatology specialist clinics, and surgery. Christine has extensive experience as a clinical trial nurse coordinator, and spent 5 years managing the Dermatology Clinical Trials Unit at the Skin & Cancer Foundation Inc in Victoria. She also holds a Master of Applied Science in Chinese Medicine (Acupuncture) and spent 4 years in private practice.
She is passionate about helping advance medical research and ensuring that people have access to medications and new therapies in their development phase.
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