Loubna Bijdiguen’s inspiring speech, “My Journey with PPI at QMUL: A Personal Reflection.”

9 June 2026

My Journey with PPI at QMUL

A Personal Reflection| Loubna

1. Who I Am

My name is Loubna. I am a community worker and researcher, and a PPI member at QMUL. I have worked in East London with communities who have often believed, in one way or another, that their voices do not count.

I want to say something at the start that I believe very deeply: decisions are made about communities without communities being meaningfully involved or valued. That is why I do the work I do. And that is why being here — being part of PPI at QMUL — matters so much to me.

I have worked with communities since 2019, delivering cancer awareness programmes across 10 North East London boroughs —in breast, cervical, and bowel cancer — using different languages with my colleagues and working on breaking down some of the major barriers of screening amongst underserved and undervalued communities across London. I have had thousands of conversations with women and men at GP surgeries, market stalls, community events and centres, festivals, schools, local libraries and many more other spaces where we could reach communities in public spaces. We spoke to women who were afraid. Women who had never been asked. Women who had been turned away, misunderstood, or simply never told that screening could save their lives.

That is the world I brought with me into PPI.

2. Why did I Get Involved?

In July 2023, I received an email from Christina who was looking for women connected to communities in East London — Pakistani, Bangladeshi, Somali, refugee communities — to join an advisory group for a research project on breast cancer outcomes.

She asked: what do these communities think? What are their experiences? What could be done better?

These questions resonated with me. Because I was talking to women who had missed their mammogram appointments. I was actively involved in community engagement events, reaching patients from one event to another, standing at stalls for hours, sitting in waiting rooms, trying to understand why women weren't coming forward and talking to them and hearing their stories to find some answers. I knew I had much to contribute as a woman, both from personal and professional experience. I had some answers for these questions, but I had never been invited to bring them into a university context.

 

I got involved in PPI the project for Improving breast cancer outcomes in East London for three reasons.

First, because of the women I work with. In my work, conversations with women made me realise that tackling health inequalities cannot be reactive — it has to be proactive, deliberate, and sustained. The women I work with are not on the margins by accident. They are marginalised by systems that were not designed with them in mind. Working with women who face structural barriers to healthcare — language, culture, distrust, poverty —countless conversations and stories that revealed what data alone could not show. And I knew that if I had the opportunity to bring what I had learned from those women into a research setting, I had a responsibility to take it. Getting involved in PPI could begin to change that. It felt not just worthwhile but necessary.

Second, because I believe that research without patient and public voice is incomplete. I believe that patient-centred evidence matters a great deal. Research is designed without patient and public voices, conducted without them, published without them — and then handed back to them as a leaflet, in a language they don't use, about problems that were never quite described the way they would describe them. Patient and community evidence has not been valued as highly as traditional academic methods. Data is important, but a patient-centred evidence base is even more necessary to tackle health inequalities. When data is collected about communities that were never consulted, it misses the most important things — the lived experience, the cultural context, the barriers that never make it onto a survey form or a report. Centring PPI voices is how we build knowledge that actually reflects reality. And that essentially means centring PPI voices not just at the end of research, when findings are being disseminated, but at every stage — from choosing the question, to designing the methods, to interpreting what the results mean for real people's lives. That gap between what PPI knowledge and what systems act on is where health inequalities live. Closing that gap is why I am part of this work.

And third — because I had seen, in my own experience, what happens when we are excluded. I had experienced, personally, what exclusion from research feels like. I have been told — directly — that my voice was too dominant. That my perspective didn't fit the framework. And every time that has happened, I have asked myself the same question: should our voices not be heard more? Should they not be centred, after being de-centred? Should we not challenge whose knowledge is seen as legitimate and whose is not? Is it not time to build more anti-racist and anti-oppressive practices in relation to research and communities? I know what it means to have your insights extracted while being kept at the edges of the process that produced it. That experience did not make me want to step back. It made me more determined to step forward — and to make sure that the communities never have to feel that way either.

PPI felt like an answer to those questions, or rather a beginning.

3. What Have I Gained from my PPI Experience?

People sometimes ask me what I have gained from being a PPI member. And I want to give an honest answer, because it is more than I expected — and also different from what I expected.

A deeper understanding of Research What I have gained from being involved in PPI is, honestly, more than I expected — and different from what I expected. I came in as a health facilitator with frontline experience. I gain something broader. I now understand how cancer research works —different ways scientific data can be collected, how work is done on findings, GP referral data. I understand what quantitative analysis can and cannot tell you about a community. When I speak about breast cancer now, I am not only drawing on my experience — I am drawing on evidence I and my fellow PPI members helped to shape.

Professional Growth and Recognition I have grown professionally in ways I did not anticipate. I was named as a co-author on a conference abstract submitted to the European Health Psychology Society, and on the report of the Improving Breast Cancer Outcomes in East London. I was listed as a named community researcher on the Tower Hamlets Council website. I was also nominated to join the WIPH Research Committee—as a PPI member. And I am currently a PPI advisory group member and a Ethics committee member. These are not symbolic steps. They are evidence that this kind of involvement creates real pathways.

Confidence and Voice I have gained confidence — a different kind of confidence from what I had before. There is something profound about sitting in a table, although often a virtual one, with specialists and realising that what you know, and what you have learned from years on the ground is not just welcome — it is necessary. That shift — from feeling like a guest in those spaces to feeling like a contributor— has changed how I see myself as a contributor to research bringing expertise and insight. More broadly, I have learned to speak honestly about power, about exclusion, about whose knowledge gets valued and whose gets dismissed. And I have done it in rooms where that honesty was not always comfortable. But it was always necessary. That kind of recognition — that sense of being valued as an important voice in research is vital.

Connections and Networks I have gained connections that are opening real doors —with researchers at QMUL, links to the PPI network, and a peer community of fellow researchers across community organisations, the council, and the voluntary sector. Those connections are not just professional contacts. They are a network of people who share a common commitment to doing research differently — and who I can call on, and who can call on me, as we try to build something more equitable together and tackle health inequalities.

Impact and Purpose And above all, I have gained a strengthened sense of purpose. I have seen my contributions shape research findings — from helping interpret GP mapping data, to influencing the evidence synthesis on interventions, to ensuring that the voices of women from marginalised communities are present in a report that could inform future policy. When PPI members are genuinely involved, the research gets better. When I can point to something concrete and say — we helped make that happen — that is not just professional satisfaction. That is what health equity looks like in practice. And that is why I am passionate about doing this work together.

4. What I Would Like Researchers to Keep in Mind

I want to speak directly now to the researchers and academics, because PPI only works when both sides are doing their part.

Involve Us from the Beginning — Not as an Afterthought I want to start with something that sounds simple but is, in practice, still not happening consistently enough. Involve us from the beginning. Not when the research question has already been set. Not when the methods have already been designed. Not when the findings have already been written up and you need a community voice to make the dissemination look inclusive. Involve us at every stage — from choosing what to research, to deciding how to research it, to interpreting what the results mean, to shaping how they reach the people who need them most.

Recognise Lived Experience as Expertise and treat what PPI members bring as evidence. Not as background. Not as context. Not as a human-interest story to open a presentation with before getting to the ‘real’ data. There is still, in many research settings, a hierarchy of knowledge. Academic evidence at the top, community voices somewhere near the bottom. I want to challenge that hierarchy. What I know from many years of conversations with women is evidence. It is not anecdote. It is not background. It is data. The knowledge that comes from living with a condition, from navigating a health system, from being part of a community that has been underserved — that is rigorous, it is specific, and it is irreplaceable. Challenge the hierarchy that places academic evidence above patient and public experience and expertise. Both are necessary. Neither is complete without the other.

Address Power Dynamics Honestly This one is perhaps the hardest, but it is the most important. At every stage of your research, ask yourself honestly: are we doing this with patients and the public, or to them? Be transparent about who defines the research question, who is named in outputs, and who gets to stand at the front of the room and present. These are not administrative details. They are indicators of where power sits in the research relationship. Create genuine space for PPI members to challenge and redirect the research. Be open about your own interests and positionality.

Communicate Clearly and Accessibly and make sure the technology and logistics of involvement work for everyone. Produce materials in multiple languages where communities need it. And make sure research findings reach patients and communities through the formats and spaces that are actually accessible to them — not only through journal publications that nobody outside of academia will read.

Value Our Time and Wellbeing Recognise that PPI members are giving up time from busy lives, from caring responsibilities, and often from managing their own health conditions. Make that time feel worthwhile —also by genuinely acting on what people contribute. Offer training and development opportunities so that involvement builds something lasting for PPI members, not just for the institution.

Close the Loop — Always Tell us what happened with our input. Did our contribution shape the research? Did it change a finding, a recommendation, a direction? Implement a clear feedback mechanism so that patients and the public can see what was done with their contributions. Accountability is not an add-on to good PPIE — it is what makes meaningful involvement possible in the first place. And when you publish, when you present— bring your PPI members with you. Not just our words but Us.

Build Relationships, Not Projects Finally — and this is the one I would ask you to carry out of this room today — PPIE cannot be a box to tick on a funding application. It must be a sustained commitment that outlasts any single project or funding cycle. Invest in relationships with patients, the public, communities, and voluntary organisations before you need them for a project. Not only when a deadline is approaching and you realise you need a community voice in the room. Remember that the patients and communities you are working with have often felt unheard or let down by health and research systems before. Trust is built slowly and broken quickly. If you do that, genuinely and consistently, you will not just produce better research. You will produce research that actually changes lives.

5. Why Early Cancer Detection Matters to Me

The Women Behind the Statistics I want to start not with data, but with people. Because everything I know about why early detection matters, I learned first from women — not from research papers. Conversations with these women never leave you. They stay with you on the way home, in conversations with colleagues, and sometimes in your mind years afterwards. I have spoken with women from many communities across London who avoided seeking help not out of carelessness, but out of fear, out of language barriers, distrust of the NHS, and a belief I have heard repeated more times than I can count — that a cancer diagnosis means death, full stop. That belief is not ignorance. It comes from watching people they know or have heard of receive a diagnosis too late, when treatment options were limited and hope was already fading. It is a rational response to a system that has repeatedly failed them. And it is costing lives.

What the Evidence Tells Us The research that this PPI group contributed to made something very clear: breast cancer survival in East London is lower than the national average. Not because cancer here is more aggressive. Not because these women are unlucky. But because the systems designed to catch cancer early were not designed with them in mind. The data showed that GP referral rates vary dramatically across East London practices — meaning that where you live, and which GP you are registered with, can determine whether your cancer is caught early or late. The evidence synthesis also showed that language-sensitive, culturally appropriate, and community-led interventions significantly improve screening uptake — proving that the barriers to early detection are not inevitable. They are solvable. If the will is there.

The Human Cost of Late Diagnosis A diagnosis at Stage 1 is not the same as a diagnosis at Stage 4. The difference between those two moments is not luck. It is access, awareness, trust, and the willingness of health systems to meet women where they are. Late diagnosis means more aggressive treatment, worse outcomes, and a burden — emotional, physical, financial — that falls hardest on the women and families who are already carrying the most. Women in our community engagement campaigns told us about pain during mammography that put them off returning. About misconceptions that radiation during screening could be harmful. About screening centres that offered no privacy for women whose faith required it. About letters and phone calls that never reached them in a language they understood. About receptionists who hung up when they heard a particular accent. These are not small complaints. They are the specific, solvable reasons why women are being diagnosed too late. And every one of them is a reason why early detection has to be a priority — not just clinically, but structurally and culturally.

Why Community Voice is Inseparable from Early Detection Early detection is not just a clinical issue. It is a justice issue. Because the women least likely to be screened are the women who already face the greatest disadvantages — language barriers, poverty, cultural barriers, mental health challenges, precarious living conditions, and a deep and justified distrust of institutions that have let them down before. More often than not, you cannot reach those women with a leaflet. You cannot reach them with a letter. You reach them through community champions who speak their language and are willing to hear their stories. You reach them through faith-sensitive screening environments. You reach them through coffee mornings at local schools, through stalls at markets, through WhatsApp groups and face-to-face conversations that build trust over time. Every single one of those recommendations came from our PPI group — from women who had those conversations themselves, who knew from experience what works and what does not. That is what community involvement in research on early detection produces. Not just better findings. Better interventions. Interventions that reach the people who need them most.

What I Carry Forward I think about the women I have spoken to who finally went for their mammogram after one of our calls. And I think about the women who didn't. I think about what early detection could mean for each of them. As long as there are women in East London — or in any community, anywhere — who are being diagnosed too late because the system was not built for them, our work is not finished.

6. Closing

Being part of PPI at QMUL has been one of the most meaningful experiences of my professional life. I am grateful to the researchers who welcomed us as partners, to Christina and the team for building something that felt real, and to my fellow PPI members who joined me in this venture and keep bringing insight to academic research.

PPI, for me, is about collaborative working, impact, and real change. Genuine power-sharing that can lead to health equity.

I hope that what we have built together here is just the beginning.

Thank you.