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Exploring Public Member Experiences in Health and Care Research
February 27 @ 2:00 pm - 3:00 pm
Does public involvement in health and care research differ across geographical settings and disciplines? Join us as we gather insights from those directly involved in NIHR funded projects in the UK and Lower/Middle Income countries. Their stories of involvement will both inspire and challenge our approach to working with people and communities in health and care research.
The NIHR is committed to partnering with patients, service users, carers and communities, to improve the reach, relevance, quality, and impact of research it supports. Public members bring in their lived experience of a disease condition, caring responsibilities, or demographic background to the thematic area of a research study. NIHR encourages award holders to integrate public voice in the full spectrum of research, from identifying research topics, proposal development, delivering and disseminating research findings. Individuals are drawn to research projects that directly relate to their own health conditions, personal experiences or community concerns, sharing their valuable insights based on their lived realities. Public members contribute in different ways including highlighting key areas of research need, reviewing documents, undertaking interviews, presenting research outputs or co-authoring papers among others. Is this contribution or the experience thereof shaped by where one resides?
The NIHR Patient and Public Involvement and Engagement Team (PPIE) are pleased to announce our second webinar to stimulate bi-directional learning, “Exploring public member experiences in health and care research”. The webinar will seek to explore public member motivations for (and experiences of) involvement in health and care research. We will explore how experiences vary between country settings, what meaningful public and community involvement looks like in different local contexts, and how public and community members interface with researchers to improve research outcomes and integrity.
Key Speakers:
Charles Boucher: A retired international Corporate Treasurer and Finance Director and latterly specializing in early stage ventures with new methods of Medical Diagnostics. Involvement as a patient and carer in NHS groups at the primary care level and more recently working with research pharmacists and pharmacy educators as a patient, carer and public representative.
Hilaria Asumu: A politician and healthcare advocate with a focus on organ donation and kidney disease, Hilaria’s advocacy work is driven by her personal experience of kidney disease and a life-saving transplant. In addition to her role as Councillor for Walkden South, she is an advocate for health inequalities (with a focus on women and the Black community) and healthcare/community reform, and has founded the UK’s first Black kidney charity.
Milcah Mwamadi: Community Involvement Lead for the past 5 year in a Stillbirth and Neonatal Death NIHR Global Health Research Project. Leader on 8 project work streams in Malawi, Zambia, Zimbabwe, Tanzania, Kenya, Uganda, Pakistan, India. Milcah also trains other CEI staff As the Unit Lead I train other CEI(PPI) on how they can form and run CEI groups.
Sayyeda Zoone Hasan Sultan: Currently the CEO of Thali, a nonprofit focused on mental health advocacy, and 37°North, a creative studio that merges purpose-driven content with innovative strategies. She has over 8 years of experience in mental health. She was a consultant by experience with ENHANCE, ensuring human-centric design in their app. Her work bridges the gap between mental health, social impact, and creative solutions.
