Public contributor spotlight: Sadia’s take

At the NIHR Birmingham Biomedical Research Centre, we work with patient and public contributors across a range of health conditions. But who are they, and what is it like to get involved in research as a member of the public? To find out, read this piece authored by our public contributor, Sadia Haqnawaz.

My name is Sadia Haqnawaz. I am a British Pakistani Muslim woman and a mother to four boys. My own experiences of pregnancy and baby loss fuelled my interest in improving care for other parents, and one of the ways I found to do this was through patient and public involvement (PPI).

My own experiences of pregnancy and baby loss fuelled my interest in improving care for other parents.

Over the years, I have contributed to a range of projects and organisations focused on bereavement care, maternity safety, women’s healthand equitable access to services. PPI introduced me to research, gave me opportunities to develop new skills and eventually contributed to my decision to undertake a PhD.

PPI introduced me to research, gave me opportunities to develop new skills and eventually contributed to my decision to undertake a PhD.

Finding my voice through PPI

My involvement began as a patient voice. In 2021, following the publication of Birmingham City Council’s Infant Mortality Scrutiny report, I challenged the lack of patient voice within the inquiry. I firmly believed that if recommendations were going to be trusted by the communities they were intended to support, people needed to know that patients and families had been consulted and involved in shaping them.

Following this, I was invited to join the Infant Mortality Taskforce. This led to further work with the Integrated Care Board (ICB) around improving care, as well as opportunities to become involved in research through PPI.

I was the first member to join the Hildas, a PPI group at the University of Birmingham led by experts from the National Institute for Health and Care Research (NIHR) Biomedical Research Centre (BRC): Birmingham’s Women Metabolic Health research theme. The Hildas aim at improving women’s health outcomes, and alongside participating in group meetings – including a workshop in South Africa! – I also supported the recruitment of other contributors. An important part of this was trying to ensure diverse representation in work around maternity safety and women’s health.

Recruiting PPI members taught me something that I had perhaps underestimated before: how difficult it can be to explain what PPI actually is, and to build the trust needed for people to become involved. My experiences since then have also shown me how easily that trust can be lost, particularly when involvement feels one-sided or when people cannot see what has happened as a result of their contribution.

From PPI contributor to researcher

Through the connections and experiences I gained as a PPI contributor, I undertook community research training. I had become increasingly interested in conducting research myself and felt that my position as an insider could help me reach communities that are often underserved or underrepresented in research.

In 2022, I was extremely fortunate to begin a PhD on a topic very close to my heart – exploring Muslim parents’ experiences of termination of pregnancy for medical reasons. I firmly believe that the knowledge, confidence and experience I gained through PPI contributed to getting me there.

I am now writing up my findings. In many ways, this research brings together different parts of my journey: my own experiences of pregnancy and baby loss, my involvement in improving maternity and bereavement care, my experience as a PPI contributorand now my role as a researcher.

Interestingly, becoming a researcher has not made my PPI identity feel less important. If anything, I sometimes find the PPI role more powerful. As a researcher, I am expected to justify my arguments through evidence, methodologyand literature. As a PPI contributor, there is a different kind of authority in being able to say, “This is my experience and this is what matters to me.”

As a PPI contributor, there is a different kind of authority in being able to say, “This is my experience and this is what matters to me.”

Experiencing both sides of PPI

Conducting PPI for my own PhD was an important learning experience because, for the first time, I found myself on the other side of the table.

It made me appreciate how much work goes into meaningful involvement. Planning meetings, explaining research clearly, making space for different voices, managing practicalities, and ensuring that everyone feels heard can be challenging. Having experienced PPI from both perspectives has made me think more carefully about what good involvement actually looks like.

I have also supported other PhD students with coordinating PPI activities and facilitating meetings. I think having experience on both sides helps. I understand some of the pressures researchers face, but I also know what it feels like to sit in a meeting as a contributor and wonder whether what you are saying will make any difference.

The importance of meaningful involvement

One of the things I have reflected on throughout my PPI journey is what meaningful involvement actually looks like.

The question of impact is important to me. I do not always know what difference my contributions have made. In some projects I have received excellent feedback showing how my input directly influenced changes, and that is incredibly valuable. In others, it can be difficult to see where the PPI contribution sits within the final piece of work.

I have learned that meaningful involvement is not just about inviting people to participate. It is also about creating opportunities for contributors to see how their views have been considered and where they have helped inform decisions. Even when suggestions cannot be taken forward, clear communication helps people understand the reasons why.

There is also an interesting tension that comes with becoming an experienced PPI contributor. Experience should be an asset, yet contributors are often expected to balance two roles: developing their understanding of research while continuing to bring an authentic public perspective.

I have never quite got my head around the idea that these things are somehow in conflict. People do not stop being patients, carers, parents or members of their communities justbecause they have developed research knowledge. If anything, experience can help contributors understand where and how their perspective can have the greatest impact.

Where can PPI lead?

My own journey has made me think a lot about progression opportunities for PPI contributors.

When I share my journey from PPI contributor to PhD researcher, I am often asked by other contributors, “How can I do that?” This makes me think there is a real appetite among some contributors to develop new skills and explore research more deeply.

Of course, not every PPI contributor will want to pursue further training or a research career, and there should never be an expectation that they do. However, for those who are interested, it would be valuable to see clearer opportunities to build on the knowledge and experience they gain through involvement.

Universities and research organisations are particularly well placed to support this. Opportunities such as training, mentoring, short courses or skills-development activities could help contributors who wish to learn more about research and explore where it might take them.

For me, PPI became a pathway into research that I never expected. It introduced me to new ideas, developed my confidence and ultimately contributed to me undertaking a PhD. Looking back, I feel fortunate that those opportunities arose. It would be wonderful to see more contributors able to access similar opportunities through clearer and more visible pathways.

The world of academia should not feel unattainable to PPI contributors. My own journey has shown me that PPI can be a route into research, and I hope that more people will be supported to explore similar possibilities if they choose to do so.

My advice to someone considering PPI

For anyone thinking about becoming involved in PPI, my advice would be to give it a go!

I would also encourage new contributors to spend some time learning what PPI means and where their role fits within the wider research cycle. Resources from organisations such as the NIHR or the NIHR BRC: Birmingham can help with this. It took me some time to understand what involvement meant and what I could contribute.

You do not need to be a researcher to have something valuable to contribute. Your experience, perspective and knowledge can identify things that researchers may not have considered.

You do not need to be a researcher to have something valuable to contribute.

When I first became involved, I did not know where PPI would take me. I just wanted to make a positive difference from experiences that had been very difficult in my own life. That first step introduced me to research, provided further opportunities and eventually contributed to me undertaking my own PhD.

So, my advice is to get involved. You may make a small but meaningful difference to a piece of research or to someone else’s care. You may also discover skills and opportunities you did not know you had, and you never quite know where that first opportunity might take you.

Are you also interested in getting involved in research? Explore how you can join our community of public contributors.