Connecting Citizens to Science The SCL Agency

Welcome to another episode of the Connecting Citizens to Science podcast, where we explore the dynamic role of public involvement in advancing health research. In this episode, hosted by Dr. Kim Ozano, we delve into the impactful world of Patient and Public Involvement (PPI) with insights from the PPI Summer School at the University of Limerick.
Episode Guests:
Dr. Jon Salsberg - Senior Lecturer in Primary Healthcare Research, University of Limerick
A dedicated public health researcher, Dr. Salsberg has an academic background in health promotion and development anthropology. His research primarily explores the dynamics of research partnerships and the transition of research leadership from academic institutions to community stakeholders.
Over his career, Dr. Salsberg has been involved in collaborative research with a diverse array of stakeholders, including patients, health practitioners, community organisations, policymakers, and health service decision-makers. His extensive work with indigenous communities includes his significant involvement in the Kahnawake Schools Diabetes Prevention Project, which is detailed here.
In this episode, Jon discusses the evolution and impact of the PPI IGNITE Network.
Lora Ruth Wogu - Founder and CEO of Sickle Cell and Thalassemia Ireland
Lora Ruth Wogu is an Allied Health Professional and a passionate advocate for diversity, equity, and inclusion in healthcare, focusing on quality patient care for migrants and individuals with disabilities. As the founder and CEO of Sickle Cell and Thalassemia Ireland, she champions initiatives to educate and improve care for those affected by these conditions. Lora also leads the Migrant Health Alliance, aiming to enhance research participation and address barriers faced by migrant communities in healthcare settings. Her work is driven by a commitment to ensuring compassionate, competent, and inclusive healthcare for all, making her a respected voice in health advocacy and policy discussions.
Lora shares her experiences with engaging migrant communities in health research.
Alison Johnson - keynote speaker PPI Summer School 2023
Alison is a passionate advocate for patient, public, and carer involvement in healthcare, focusing on serious medical conditions. Her work in PPI began as a research participant, evolving into roles as a collaborator, where she champions the inclusion of patient and carer voices in health research. A lifelong learner, Alison's voluntary efforts extend to mentoring researchers and advising on best practices for effective patient engagement.
In This Episode:
Introduction to PPI and its SignificanceDr. Kim Ozano introduces the concept of patient and public involvement and its critical role in shaping health research.
Deep Dive with Dr. Jon SalsbergLearn about the establishment and achievements of the PPI IGNITE Network, its goals for institutional change, and how it's transforming health research culture in Ireland.
Community Engagement Insights from Lora Ruth WoguDiscussion on the challenges and strategies for involving diverse communities, especially migrants, in health research to ensure their voices are heard and represented.
Experiences from the Field with Alison JohnsonAlison shares her personal experiences and the importance of having meaningful contributions from public collaborators in research projects.

Email us at hello@thesclagency.co.uk for more information or to share your thoughts.
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In this episode, we discuss meaningful participation and inclusion when working with marginalised communities. We draw on research approaches from the Reducing the Burden of Severe Stigmatising Skin Diseases (REDRESS) research programme that aims to reduce illness, stigma, social exclusion, and poverty caused by severe stigmatising skin diseases (SSSDs) in Liberia. Since 2019 REDRESS has been co-developing new knowledge together with researchers, patients and programme implementers that directly respond to priority health needs detailed in the country’s ‘Investment Plan for Building a Resilient Health System’.
Hannah Berrian who is a Research Fellow for the Patient Engagement and Person-Centred Approaches thematic area for REDRESS and Shahreen Chowdhury, a researcher and PhD student at the Liverpool School of Tropical Medicine join us in a discussion about participation and inclusion and how these impact the partnerships and power dynamics that exist when trying to improve the health and wellbeing of marginalised people.
Episode guests:
Miss Hannah Berrian - Research Fellow, UL-PIRE Africa Center
Hannah Berrian obtained a Master’s degree in Public Health (MPH) from Cuttington Graduate School of Professional Studies in Liberia. She served as Liberia’s Mental Health Research Capacity Building Coordinator for Youth FORWARD, the U.S.-National Institute of Mental Health (NIMH) funded project from a collaboration between the Boston College of Social Work in Massachusetts, U.S., College of Medicine of the Allied Health Sciences (CoMAS) of the University of Sierra Leone, and UL-PIRE Africa Center at the University of Liberia, respectively.
She has several years of professional experience in project management, qualitative and quantitative research, programme implementation, qualitative data analysis, and building capacity for mental health research, among others. Hannah is a Research Fellow for the Patient Engagement and Person-Centred Approaches thematic area on Health Systems Strengthening for Reducing the Burden of Severe Stigmatizing Skin Diseases (REDRESS) consortium.
Ms Shahreen Chowdhury - Research Assistant, Liverpool School of Tropical Medicine
Shahreen Chowdhury is a social scientist, with a background in public health and geography. She currently works as a research assistant and PhD student at the Liverpool School of Tropical Medicine. She obtained her Masters in Public Health in International Development at the University of Sheffield and has varied local and international NGO experience in diverse settings on community health programmes.
Shahreen is particularly interested in the links between equity, mental health and disability inclusion, and community based participatory research. Her PhD explores mainstreaming the rights of people with psychosocial disabilities in Bangladesh, Liberia and Lebanon. In her current work, Shahreen is passionate about using creative participatory methods to amplify the voices and experiences of vulnerable groups affected by chronic illness and disability. Shahreen has extensive experience in working with co-researchers using photovoice, storytelling and art based participatory methods. Shahreen works in Neglected Tropical Disease programmes in West Africa and South Asia with a focus on co-production, designing, implementing and evaluating case detection and community based psychosocial support systems.
Useful links:
DOWNLOAD A TOOLKIT FOR PARTICIPATORY HEALTH RESEARCH METHODS - Download and access a toolkit of PHR paradigms, methodologies and methods that can be selected and applied by researchers aiming to maximise inclusion, participation, and the achievement of more equitable research partnerships.a...

In this two-part mini-series we are focusing on health systems strengthening- what it is, how to do it and what action is needed to ensure that the approach is embedded in discussions at key global events and discussion platforms.
This episode follows on from the first episode from the Centre for Health Systems Strengthening at the Liverpool School of Tropical Medicine (episode 60) which focused on the health diplomacy and how researchers can advocate for health systems strengthening approaches and community voices in health diplomacy spaces.
Today we hear from two advocates who have been acting within health diplomacy spaces and as researchers. We hear from Emmanuel Zaizay, who is affected by the Neglected Tropical Disease Buruli Ulcer, about his experience of growing skills and capacity to communicate the needs of people affected by stigmatising neglected tropical diseases.
We also hear from Maurine Murenga, a TB advocate who has represented the TB community in high level UN meetings. She is open and honest about both the strengths and opportunities of being an advocate, but also what this means to her on a personal level. Her open reflections are really critical to how researchers function when engaging with communities.
Episode guests:
Dr Kerry Millington - Research Uptake Manager, Liverpool of Tropical Medicine
Kerry has been working in global health for over 20 years with a keen focus on ending the tuberculosis epidemic. A key part of her work is developing trusted relationships with range of stakeholders to work in partnership, in collaboration and in a coordinated way ensuring the academic and health professional voice credibly informs decisions that impact on health. This can range from co-creating research ideas to influencing policy and political commitments. A key stakeholder to engage with is the voice of TB survivors and advocates to accelerate action for those in most need of innovations in TB care and prevention to transform lives.
Maurine Murenga - Coordinator of TB Women Global
Maurine Murenga is a passionate advocate for the health, development and human rights of women and children. Maurine’s passion for advocacy is driven by her lived experience, and the inequality and vulnerability that young women and adolescent girls experience in her community.
Maurine is currently the coordinator of TB Women Global, Board Member of Unitaid, Friend of the Fight US and EGPAF Kenya. She is a former board member of the Global Fund to fight AIDS, TB and Malaria and is also a member of WHO's Global Accelerator for Pediatric Formulations Advisory and Union Working Group Gender Equity in TB. In Kenya – Maurine is a member of the Global Fund Country Coordinating Mechanism and Elimination of Mother to Child Transmission of HIV Committee of Experts.
Emmanuel Zaizay – Co-researcher and advocate, REDRESS, Liverpool School of Tropical Medicine
Emmanuel Zaizay is from Lofa County, Voinjama District. He works with REDRESS as a coresearcher and was recruited as a patient affected person having been diagnosed with Buruli ulcer. He also serves as a data collector, working in photovoice settings and participatory methods such as bodymapping and focus group discussions.
Useful links:
S8E3 - Being a co-researcher with lived experience of an NTD - Emmanuel Zaizay, who is a peer researcher in the REDRESS programme and is affected by Buruli Ulcer, a neglected tropical disease, features in this earlier epsiode. He shares with us the value of learning new skills, through becoming a co-researcher, which has helped him better connect with his community and contribute to the improvement of medical and...

Hello Listeners! In this episode we are joined by the Centre for Health Systems Strengthening at the Liverpool School of Tropical Medicine, also known as CHESS. In this first episode of a two-part mini-series focusing on health systems strengthening, we talk about health diplomacy and why it is needed.
We hear from Dr. Joanna Raven and Dr. Kerry Millington, who have both been working in global health for over 20 years and are passionate about embedding both health systems strengthening approaches and community knowledge into political commitments and policy reforms.
Bringing a perspective from the fields of maternal and child health, lung health and tuberculosis, Dr Uzochukwu Egere co-hosts this episode where we discuss health diplomacy as a new field for academics and healthcare professionals. One that is about making connections, sharing intel and learning how the United Nations and other High-Level Meetings work, so we can effectively share evidence quickly in often extremely short windows of opportunity, so policy makers can listen and act.
Dr Uzochukwu Egere - Senior Research Associate, Emergency Obstetric and Quality of Care Unit, Department of International Public Health (Liverpool School of Tropical Medicine)
Uzo is a paediatrician and public health researcher with extensive experience in multidisciplinary global health research. His research interest is in implementation research and health systems strengthening to tackle inequities in the fields of Maternal and Child health, Lung health and Tuberculosis. Uzo’s work focuses on health and health systems challenges relevant to low-and middle-income settings and facilitates interactions between researchers and consumers of research outputs (the community) to ensure timely policy change, uptake of interventions, and universal health coverage.
Dr Joanna Raven - Reader in health systems, Liverpool School of Tropical Medicine
Jo has worked in global health for more than 25 years, focusing on strengthening health systems. Jo is a researcher with a passion for co-designing and implementing health system research with local stakeholders including community members, health workers, health managers and decision makers. As a health worker herself, Jo’s work focuses on supporting the health workforce to deliver people-centred care that is of good quality and leaves no one behind.
Dr Kerry Millington – Research Uptake Manager, Liverpool School of Tropical Medicine
Kerry has been working in global health for over 20 years with a keen focus on ending the tuberculosis epidemic. A key part of her work is developing trusted relationships with range of stakeholders to work in partnership, in collaboration and in a coordinated way ensuring the academic and health professional voice credibly informs decisions that impact on health. This can range from co-creating research ideas to influencing policy and political commitments. A key stakeholder to engage with is the voice of TB survivors and advocates to accelerate action for those in most need of innovations in TB care and prevention to transform lives.
Research programme links:
ReBUILD for Resilience - Research on health systems in fragile contexts
PERFORM2scale – Scaling up PERFORM
ReDRESS - Strengthening people-centred health systems for people affected by severe stigmatising skin diseases in Liberia
LIGHT - Aims to support policy and practice in transforming gendered pathways to health for people with TB in urban...

In this episode we will be hearing about a seven year research programme known as COUNTDOWN. COUNTDOWN consisted of multidisciplinary research teams across 4 countries- Ghana, Liberia, Nigeria and Cameroon and used co-production research approaches to improve the equity and efficiency of health systems interventions to control and eliminate seven Neglected Tropical Diseases.
Research was implemented at each of the health system levels from policy to community and is all documented in the Journal ‘International Health’ as a supplement entitled Stronger together: evidence for collaborative action on neglected tropical diseases. The supplement tells the story of how the programme engaged with people who have lived experience, health workers, and policy makers and really emphasises the importance of togetherness.
Our guests today are Dr Luret Lar who was the programme manager employed by Sightsavers Nigeria, a collaborator on the COUNTDOWN programme, Dr Karsor Kollie who is the Program Director for Neglected Tropical Diseases at the Ministry of Health Liberia and Laura Dean from the Liverpool School of Tropical Medicine who was the Social Science lead for COUNTDOWN.
Dr Laura Dean – Lecturer, Liverpool School of Tropical Medicine
Laura has worked for the last 15 years in the use of participatory health research methodologies to support community and health systems development across sub-Saharan Africa and south Asia. Through participatory action research projects, she supports capacity strengthening within communities and health systems so that stakeholders can identify challenges and co-produce solutions. The majority of her work has focused on increasing inclusion and participation of people with lived experience of mental health conditions and chronic infectious diseases of poverty, for example neglected tropical diseases.
Dr. Luret Lar - Medical Doctor, Public Health Physician, Lecturer, University of Jos, Nigeria
Luret was involved in implementation research for seven years in collaboration with Liverpool School of Tropical Medicine when she was working for Sightsavers. Her interest and passion about preventive medicine and including the voices of the voiceless have influenced her research career over the years. Luret was interested in inclusivity at all levels of implementation in the neglected tropical diseases programme. This connected her with people affected by neglected tropical diseases and implementers at the community facility, state, and federal levels. She worked closely with these implementers to co-produce solutions to implementation challenges that everyone collectively identified.
Karsor Kollie – Programme Director, Ministry of Health, Liberia
Since 2011, Mr Kollie has established and headed the Liberian Integrated NTDs Prevention and Control Programme and is based within the Ministry of Health and Social Welfare. He developed the NTD country master plan which forms the operational national guide for the next 5 years.
Under his leadership the Liberian programme is making excellent progress in MDA control of Lymphatic Filariasis, Onchocerciasis, Schistosomiasis, Soil-transmitted Helminthiasis (STH) where treatment coverage has not gone below 75%, respectively. Alongside this, he is making significant progress in the development and application of new monitoring and evaluation criteria tailoring activities effectively with difficult on-the-ground terrain.
More information can be found in the special supplement discussed in this episode: Stronger together: evidence for collaborative action on neglected tropical diseases | International Health | Oxford Academic (oup.com)
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In this episode we are talking about the FEPOW Research Group. FEPOW stands for Far East Prisoners of War, and it focuses on capturing the history of civilian captives during the second World War and the impact that this has had on subsequent generations.
The group brings together veterans, their families, writers, and academics to create a friendly space to capture stories that we can learn from and apply to research now.
Approximately 240,000 Allied servicemen had become prisoners of war of the Japanese by early 1942. Over 50,000 British were captured during the fighting in Hong Kong, Malaya, at the fall of Singapore and across the former Dutch East Indies (now Indonesia). The 415-kilometre Thailand-Burma railway was built by Far East prisoners of war (FEPOW) who were part of a huge slave labour force drafted from across the region. The railway provided the Japanese with a vital supply route for their fighting forces in Burma. It was forged through raw jungle, across mountain passes and was completed in a little over 15 months in October 1943. Of the 30,000 British FEPOW sent to camps in Thailand and Burma over 6,600 died.
For this episode, we welcome a new co-host, Geoff Gill from the Liverpool School of Tropical Medicine, where he has been involved with research and clinical care of former Far East prisoners of war.
He has led the medical history inquiries into Far East imprisonment, resulting in two recent books, Captive Memories, and Burma Railway Medicine. We also have two great guests, Brian Spittle and James Reynolds.
Geoff explains to us “I think one of the things I've learnt over the years, is that there are many different ways of telling a story and there's no one right way there, there are many different ways.” and in direct reference to the stories shared directly from the FEPOWs and their archives “It's a story worth learning from, and I think we have receptive generations to tell it to.”
This episode features:
Prof. Geoff Gill – Professor of International Medicine, Liverpool School of Tropical Medicine 
Geoff Gill is Professor of International Medicine at the Liverpool School of Tropical Medicine (LSTM) and the University of Liverpool, and a retired NHS Consultant Physician. At LSTM he has been involved in the medical care of ex-Far East Prisoners of War (POWs), as well as extensive clinical research into their ongoing health problems – notably persisting malaria and amoebic dysentery, chronic worm infestations, hepatitis B infection, long-term effects of vitamin deficiency, and the extensive psychological aftermath. He has published extensively on these and other POW-related health issues. More recent research has involved the medical history of the Far East POW experience, in particular on the Thai-Burma Railway. This resulted in a PhD degree in 2009, and the book Burma Railway Medicine (with Meg Parkes) published in 2017. The LSTM Far East POW Project has been in operation in different forms since late 1945, and is the longest collaboration in the School’s history.
Brian Spittle
Brian grew up in the UK and in his mid-twenties moved to the United States to pursue postgraduate studies. He has lived in Chicago for the past forty years, retiring from a career in higher education administration six years ago. His father, Jack Spittle, was in the RAMC during the Second World War, arriving in Singapore at the end of November 1941. He worked in the dysentery wing at Roberts Hospital at Changi, and followed the hospital moves to Selarang and Kranji. A keen ornithologist, he made detailed observations of the birds at Changi, publishing them after the war in the Bulletin of the Raffles Museum. It was only after his father died in 2004 that Brian found the notebooks he had made in captivity. Brian is close to completing a memoir about his own journey to understand more of Jack Spittle’s time as a POW and...