The SPHR public advisory network includes around 60 members of different ages, ethnicities and walks of life. Here, they tell us more about their interest in public health research, why they got involved and advice to those thinking about getting involved.
Hameed Khan
Which areas of public health interest you and why?
The areas of public health that interest me include mental health conditions and dementia. I cared for my uncle who had dementia, and my mother is also showing signs of dementia, so these issues are very personal for me. I am also a heart failure patient, and I’ve had open heart surgery. I want to be voice for underrepresented groups.
How did you get involved in public involvement at the SPHR?
I got involved in public involvement at the SPHR by getting involved with a research project. Through the project, I found out more about the School and joined the Public Advisory Network to be a voice for LGBT and BAME communities.
What would you say to someone who was thinking about getting involved?
You will gain knowledge, skills and competence as well as insight into how you can shape and influence health research agendas.
Geoffrey Gleadhill
Which areas of public health interest you and why?
I’m interested in lots of areas of public health but perhaps especially issues related to the health and wellbeing of the elderly.
How did you get involved in public involvement at the SPHR?
I got involved with SPHR because the chair of one my committees recommended it to me. Being a member of the Public Advisory Network has enabled me to know about lots of different projects, I’ve also helped to shape the way that research is undertaken. After meetings I feel satisfied inside that I have helped.
What would you say to someone who was thinking about getting involved?
I find being a member of the SPHR that your voice is heard and you have helped people.
Sarah Markham
Which areas of public health interest you and why?
All areas of public health are so important from both a mental and physical perspective. When I think about my own experiences of health and illness in childhood, I don’t think that I would have had the same experiences if there had been a greater emphasis on preventative public health policies and actions. Things are changing now and I’m proud to be part of this change. Our lives are grounded in public health, it helps to protect society.
How did you get involved in public involvement at the SPHR?
My interest in public health has always been strong and I have always been very interested in developments in research and new policies and strategies. Through reading about this, I came across the SPHR and saw that members of the public could take an active role in research. This made complete sense to me because we all have lived experience in public health, we all have a perspective, we all have knowledge and experience about what works and what’s missing in society. My experiences of involvement at the SPHR have had a positive contribution to things like my self-esteem, because I am a valued partner and my contribution helps.
What would you say to someone who was thinking about getting involved?
Do it! I’ve especially enjoyed meeting and learning from other members of the public, everyone is different with different experiences and it’s an opportunity to work together in complimentary ways. It can feel like you are part of something bigger than yourself. You are part of group who, despite differences, have this shared interest in learning new things about our health and wellbeing and making a difference to society, it gives you a sense of belonging.
Kate Hawley
Which areas of public health interest you and why?
I became particularly interested in maternity-related services as a result of having my children. During my pregnancy and post-partum periods I became involved in the Maternity Voices Partnership in Newcastle, which is a patient advocacy and involvement network for patients, patient families and care-providers at the Royal Victoria Infirmary. This involvement has enabled me to share my experiences related to childbirth and learn from others. I was also able to work alongside others to understand patient care in relation to impact and highlight what can be improved to generate better outcomes. As a group, we have subsequently helped to influence and improve maternity related services which support women and their families.
How did you get involved in public involvement at the SPHR?
I learnt about the School for Public Health Research through my involvement with the NIHR and the School for Primary Care Research. I’ve found being a part of involvement from the Public Health perspective really interesting. There is a real diversity of people, including a range of ages, backgrounds and locations. This creates a really vibrant atmosphere with lots of differing experiences, perspectives and priorities yet we also share this common goal of patient advocacy and making a difference to research and health outcomes for everyone. I’ve learned a lot from listening to others sharing about their experiences and have enjoyed sharing my own experiences and perspectives.
What would you say to someone who was thinking about getting involved?
Go for it! I’ve met a lot of interesting and friendly people. You can also influence the direction of travel of research! Your voice is important, you may have that insight or question that really helps to challenge and shape public health research, impacting positively on people’s health and wellbeing across society.
Steve Moore
Which areas of public health interest you and why?
Health improvement interest me as I love how the individual member of public can take responsibility for their healthcare. I’m also interested in emergency preparedness…having worked in the health service I have done a lot of risk assessment work and planning for incidents and disasters.
How did you get involved in public involvement at the SPHR?
I wanted to contribute to research and development following my career in the NHS and saw this being a great way to get involved. I have enjoyed the opportunities to date.
What would you say to someone who was thinking about getting involved?
Do not hesitate to get involved!
Yasmin
Which areas of public health interest you and why?
I am particularly interested in mental health, health inequalities, and culturally competent care due to my own lived experience in these areas. Mental health is important to overall wellbeing, yet it is often overlooked in public health. My public involvement work has shown me how critical it is to address these gaps. For instance, on the ARIADNE Lived Experience Advisory Panel, I saw how barriers such as cultural stigma and systemic inequities disproportionately impact ethnic minority groups. This drives my passion to make mental health services accessible, equitable, and effective.
Health inequalities also interest me, as I’ve seen first hand how certain populations face greater challenges in accessing quality care. Through my involvement with the Digital Minds Young People’s Adv
isory Group, I help to ensure that research and interventions are shaped by the voices of young people, particularly those from marginalised communities. This experience reinforced my belief that public health efforts must prioritise inclusivity and co-design meaningfully to meet diverse needs.
How did you get involved in public involvement at the SPHR?
I first got involved in public involvement through The McPin Foundation’s Young People’s Network as part of their Keep Cool project which allowed me to co-create resources for young people’s mental health during the pandemic. I quickly realised the power of lived experience in shaping impactful research. Since then, I’ve taken on various roles, such as joining the Mental Health Research Matters Steering Group. These experiences have been truly rewarding. They’ve allowed me to see the tangible impact of my contributions, such as revising
recruitment materials to make them accessible or shaping mental health campaigns to resonate with diverse audiences. Public involvement has also deepened my understanding of the research process and reinforced my belief in the value of co-production.
What would you say to someone who was thinking about getting involved?
I would say, “Your lived experience is invaluable, and your voice matters.” Public involvement allows you to bring unique insights to research and services, ensuring they reflect the needs of the people they aim to help. It’s a chance to collaborate with researchers, influence decisions, and see the real-world impact of your contributions. For example, in my work with the Healthy Stats group at Imperial Clinical Trials Unit, my feedback helped make clinical trial information clearer for patients and the public which was incredibly fulfilling. Getting involved also gives you a platform to make meaningful change and ensure underrepresented voices are heard. It’s a rewarding way to use your experiences to create better outcomes for others and work with others from diverse backgrounds and experiences.
Mike Etkind
Which areas of public health interest you and why?
I started volunteering in the health and care field in 2016 after retiring from a career as a Whitehall policy civil servant (environment, not health). I wanted to give back as well as to occupy myself with fulfilling, and hopefully useful, activities in retirement.
I’m interested in all sorts of research and have been involved in a wide range of activities including using machine learning to predict patients at risk of re-admission to hospital, the benefits of salsa dancing for low mood, advising HRA on simplifying their standard text on GDPR, and revising an easy-read toolkit which supports older social care users to self-report. I’ve also reviewed research proposals for the NIHR and manuscripts submitted to BMJ/BMJ Open, and was a public contributor at the 2022 NIHR Doctoral Training Camp.
How did you get involved in public involvement at the SPHR?
I applied for the austerity and nutrition PPI role because it seemed interesting, and that led on to PAN and work on ultra-processed foods (UPFs). Since then, I’ve been able to contribute in a number of ways including on the SPHR’s expert group on research into austerity and as a member of the advisory group for research on UPFs. At the end of 2024, I was also the lay advisor for research into the health and well-being impacts of building and operating HS2; a member of Oxford Health Biomedical Research Centre Patients and Research Strategy Group; involved in a project on economic returns of NIHR funding; and a member of a curriculum panel for the UCL School of Pharmacy. I am also chair of my GP surgery’s patient group, a befriender with Buckinghamshire Mind, an ambassador for Buckinghamshire Healthwatch, and a member of NHS England’s Primary Care Community Engagement Strategy Group.
What would you say to someone who was thinking about getting involved?
I think it depends on each person what they will get out of PPI and whether it’s for them. All I can say is that I’ve found it stimulating, and the feedback I’ve had suggests that my input has generally been useful.
Anna Dawson
Which areas of public health interest you and why?
The primary focus for my interests relate to those aspects of health that are the poor relations of the area…for example I do work for MSK conditions and like to focus on osteoarthritis and Sjogren’s syndrome. Both of these conditions are never seen as “sexy” in terms of research, and treatment tends to relate to symptom relief rather than any work towards a “cure”
I am interested in policies around ageing and this has meant I have discovered the inequalities that are developing between old people who qualify for support and those who do not. I believe there is a new group of ‘unnoticed poor’ who, because of saving and paying into an often small workplace pension, are now excluded from hitherto accessible support and a situation can arise where they are actually poorer that their ostensibly ‘vulnerable’ colleagues. One area that I find particularly important is social care, the system is broken and the unpaid carer is suffering financially, emotionally and physically (on occasion).
Women and their problems are also often downplayed. My work with women’s urinary issues and incontinence has made me realised that the range of options for support are fewer than exist in other conditions.
How did you get involved in public involvement at the SPHR?
All of the issues above are ones I experience myself and this allowed me to bring lived experience to my public involvement role. It all started when I had a hip operation in 2010 and ticked a small box that asked me if I wanted to give feedback on my experience…and the rest, as they say, is history!!
When I retired in 2011, I felt I still had a lot to offer. I had returned to study in my 40’s and achieved a MAEd and so had more than just my ‘conditions’ to draw on when looking at funding applications and was able to offer suggestions on methods of data collection and literature searches.
I work in this area with NIHR, HCRW and a number of charities. I particularly enjoy/enjoyed working with Healthwatch until my caring responsibilities made it necessary to withdraw and currently I am involved with the Patients Association an organisation that works on improving lay involvement in research. I’ve found it incredibly rewarding. I have a lot of Alzheimer’s in my family and I’m definitely a believer in ‘use it or lose it’. It has kept me alert and interested and helps in maintaining my cognitive function.
What would you say to someone who was thinking about getting involved?
Go for it! I found the whole experience a life saver during lockdown, a chance to engage while unable to travel. I can recommend it for anyone who is not able to get out much.
The important thing is start with what you know…your aching knees or bothersome prolapse and engage as a person with experience. As you attend these meetings you will develop an understanding of processes which will enable you to participate more and more effectively.