Patient Experience Research Centre

This blog is part of a series showcasing the People’s Research Cafe which took place on the 18th and 19th June 2022 in South Kensington, London as part of the Great Exhibition Road Festival.

What is a People’s Research Café?

The People’s Research Cafe is a café with a twist. Visitors are welcomed to sit down at a table co-hosted by an Imperial College researcher and a public contributor whose role is to help the conversation flow freely. Over a free hot drink, visitors find out about the researcher’s project and will be asked for their opinions on it. The researchers are then expected to use this feedback from visitors to improve their projects. The People’s Research Café has been run previously at two Imperial Festivals (2018 and 2019) and also in four community venues. It was previously called the “PPI Café” and you can read about the one at the Imperial Festival 2018 here.

When did this People’s Research Café take place?

A People’s Research Café was hosted at the Great Exhibition Road Festival held on 18 and 19 June 2022 and was a collaboration between the following teams/centres: Imperial Biomedical Research Centre, Imperial Clinical Trials Unit, Imperial Clinical Research Facility, London In-Vitro Diagnostics Cooperative, NWL Applied Research Collaborative, MRC Centre for Environmental and Health, HPRU in Healthcare Associated Infections and Antimicrobial Resistance. Researchers from each centre were given the opportunity to apply to host a table at the Café for 2 hours where they would explain their research in plain language and ask visitors 3 questions with the help of a public contributor. It was a requirement that the research project was at a stage where visitor feedback could still influence the project. Researchers and public contributors were offered training about how the Café would work and how to maximise conversations with visitors. Ahead of the Café, researchers refined their plain language summaries and three questions to pose to visitors with the help of public involvement leads and a public contributor.

 

---

In conversation with: Ellie Van Vogt, NIHR Pre-doctoral Fellow, Imperial Clinical Trials Unit, School of Public Health

 

What research project did you bring to the People’s Research Café and what is it about?

At the Café, I presented ideas for my PhD (research degree) plan to members of the public to get feedback on the impacts of my research on them.

When someone is ill with covid, there are lots of different medicines that can be given to them. Throughout the pandemic, there have been many trials to compare different treatments for people with severe covid. Patients involved in the trial will be split into two groups randomly (like rolling some dice), one group will be the treatment group and the other will be the control group – which will either be the usual care or dummy treatment, which is known as a placebo. To figure out if the new treatment is better, we can compare what happens to the people who have the treatment and those who have the placebo (we call this group the ‘control’). For example, we might decide to compare the number of deaths in each group or the number of people who recovered within 14 days.

We might find that on average, a new treatment is not better than the usual care in treating covid. If we look at people individually instead of as a group, we can see that some people were better off having the treatment and some people would have been better off not having the new treatment. We want to develop methods to find out who these people are and what common characteristics (like age, sex, another illness) people who benefit or don’t benefit from treatment have.

This research project will continue the work of personalising medical treatments, by creating clear guidance on how and when we can look for personalised treatments and by speeding up the process of testing personalised treatments. I hope to complete this research as part of a PhD. My research will only involve looking at trials which have already been completed, it will not involve any new patients.

 

What questions did you ask visitors to the People’s Research Café about your project?

The questions I asked visitors are as follows:

1. How do you feel about research that looks for people who respond differently to treatments? Do you have any concerns?
2. Would you be interested in knowing who responds better to medical treatments? Do you think this kind of research is important?
3. In what format and where would it be most useful for you to see these results?

 

What did visitors tell you?

I spoke to 16 members of the public of varied ages, gender and ethnicity about my research plan. All attendees felt that this research was important and that they would benefit as patients receiving care from the health service. Personalisation would also mean more efficient healthcare spending and reduced waste.

There was an interesting discussion about applying the results of research to everyone if the initial sample population is not as diverse as the general population since disabled people and black, Asian and minority ethnic groups are underrepresented in research. Trial populations do not align perfectly with general populations. Attendees felt that researchers needed to be clear when talking about how their research can be applied, based on the data available to them.

Attendees highlighted the need for freedom of choice when making decisions relating to their health and would like methods that are easy to understand to describe the best treatments when multiple are available e.g videos or diagrams. Many attendees indicated that they would trust their doctor to decide in their best interests. This showed how important it is for the results of personalisation research to be communicated clearly to all health professionals.

 

How will what visitors told you impact and/or change your project?

The conversations around the application of results to other people and representation of age, gender, ethnicity and disability in research have reminded me to take extra care when communicating the results of my research and how they may or may not apply, based on the types of patients who were included in original studies. Since my research does not involve collecting new data, I will investigate how to communicate this effectively to medical staff and patients alongside the results on personalisation.

Hearing from the public about how they like to receive information has had a great influence on the visualisation and communication aspect of my research plan. Simple visualisations need to be created that are easy to read and interpret so that medical staff and patients can make informed choices about their care quickly.

 

What was your personal experience of taking part in the People’s Research Café?

Hosting a table at the café was my first experience of public involvement. I thoroughly enjoyed this unique opportunity to chat with members of the public about my research in an informal setting. This event showed me how important it is for public voices to be heard early in the research cycle to ensure maximum impact. I would highly recommend other researchers in the planning stages of projects to take part in a café, it’s a lovely way to have an organic conversation about our research and allow the public to shape and direct your plans, which leads to more useful and impactful research.

 

This blog post has been cross-posted from Statistical Methods for Contemporary Clinical Trials website, it has been cross-promoted on the PERC blog, with permission, to ensure it reaches a wider audience.

Series Navigation

<< Developing an alternative to blood tests for health investigation through a microneedle biosensor deviceAnalysing patient feedback to improve patient-centred care >>