Health researcher on the value of research ‘with’ not ‘for’ the public

28 Nov 2023

Image: Piotr Teodorowski

Piotr Teodorowski explains how research that includes public participation has ‘more real-life impact’.

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Piotr Teodorowski is a health services researcher, who specialises in patient and public involvement in research to deepen engagement and improve care systems and knowledge.

“My work has always been interdisciplinary, and the general theme is to improve health outcomes for seldom-heard communities (known also as underserved populations),” Teodorowski explains.

His recently submitted PhD thesis explored the involvement of seldom-heard communities in big-data research. For this research, Teodorowski won the Research Student of the Year Award at the North West Coast Research and Innovation Awards in the UK.

Tell us about your current research.

Currently, based at the University of Stirling, I am working on two Cancer Research UK-funded projects that aim to optimise the diagnostic pathway for patients with suspected cancer (breast in NHS Forth Valley, prostate in NHS Fife).

I am particularly passionate about the opportunity to work with public contributors and patients. My role requires me to support four public contributors (members of the public with lived experience of cancer). They ensure that research is of relevance to the public. This is achieved by their involvement in developing data collection tools and underpinning theories, and they are members of the management group alongside the research team and clinical practitioners.

We have invited the public contributors to co-author any outputs from these projects. For example, they are co-authoring a protocol paper, which is currently being drafted.

This shared ownership shows how research projects can be co-owned with members of the public.

We jointly agreed to co-evaluate their involvement at the end of the project using an established public involvement framework.

However, involving members of the public actively in research might mean that they start to have a more professional perspective. Therefore, we also involved current cancer patients through small group discussions hosted by Maggies, a UK-based charity that offers cancer support and information. During one of these group discussions, I used evoke cards (photos that patients could use to symbolise their experiences in a creative and nuanced way).

In your opinion, why is your research important?

My work has been about helping others to embed public involvement in everyday research practice.

Public involvement is about doing research ‘with’ or ‘by’ the public rather than ‘to’, ‘about’ or ‘for’ them.

Meaningful public involvement would significantly shape what we research, how we conduct studies, their analysis, interpretation and dissemination of findings.

Research conducted with the public has more potential to ensure real-life impact.

What inspired you to become a researcher?

My path to becoming a researcher was not linear and there were two spark moments.

First, when I was studying for my postgraduate degree, I joined the Grampian Regional Equality Council, a charity based in Northeast Scotland focusing on inequalities in the area. My role was to be the link between ethnic minorities and local health services. However, it was soon recognised that there was a knowledge gap in how to engage the communities. Thus, my role evolved into a researcher and community engagement officer. This experience inspired me to move into academia and do more research to help practitioners.

Thus, I joined Robert Gordon University in Aberdeen as a research assistant and worked on several projects with community nurses. I also took the lead on a study exploring the impact of Brexit on the mental health and wellbeing of European Union citizens in Scotland.

The latter project influenced the Scottish Parliament’s policy on EU citizens’ rights in Scotland.

One of the findings was that our participants felt rejected, and this might have influenced if they wanted to be a part of the community they lived in. After identifying that problem, I felt that more research was needed to understand what could be done to tackle it. This was my second spark moment as I wanted to make a difference as a researcher.

However, as a predoctoral researcher, there were limited options for me to approach that knowledge gap, so I undertook a PhD that looked at how researchers could involve and engage seldom-heard communities in big-data research.

The topic was timely as big-data initiatives have become more common in the UK, but there were also public concerns around it (especially lower support among seldom-heard groups such as ethnic minorities).

What are some of the biggest challenges or misconceptions you face as a researcher in your field?

My research experiences three main challenges. First, public involvement, engagement or co-production are used simultaneously by many researchers but actually mean different things.

Second, there are different levels of buy-in on what meaningful involvement should be and there is the risk that some public involvement in research would become tokenistic.

To overcome this challenge, I am involved in creating new national involvement and engagement standards with the Public Engagement in Data Research Initiative (PEDRI) to help researchers reflect on how they could work with members of the public.

Third, when working with the Polish and South Asian communities, I realised that often, there is no equivalent word for public involvement in other languages – which makes it challenging to get members of the public involved for whom English is the second language and they might prefer to participate in their mother tongue.

Do you think public engagement with science has changed in recent years? How do you encourage engagement with your own work?

My aim is to ensure that public contributors are a part of my public engagement plan and how I disseminate my work. However, the Covid-19 pandemic shaped how researchers engage with members of the public.

Public engagement has become more digitalised. I remain active on X (previously known as Twitter). A one-hour Tweet Chat with experts can be a particularly good way to reach X users.

A mandala of the research inputs using visuals and text to describe participants' experiences.

A mandala to illustrate people’s experiences of being involved in a research project conducted by Piotr Teodorowski and others. Image: Artwork by Federica Ciotti. Permisson from Piotr Teodorowski to share.

In one of my research projects, we organised a Tweet Chat, during which we presented and discussed our initial research findings. Using #JourneyIntoAI we spoke with people involved in research as well as external experts – this conversation involved two public contributors.

I am also a strong advocate of presenting research using creative and illustrative ways. I use visual minutes and illustrations to summarise my work. This is an eye-catching way to present them to a general audience.

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