Friday 1 December 2023

Getting creative to make research more accessible and inclusive

Posted by Victoria Bartle, Fuse Public Partner

We were throwing balls of wool around, picking picture cards to describe ourselves and having a thoroughly inspiring time. This was not your typical research conference!

It was day one and keynote speaker Pam Burnard was encouraging us to challenge the system using creative methods to subvert common assumptions.

Many of the researchers at the International Creative Research Methods Conference in Manchester are independent, not linked to a specific university or funder and this allows them to approach research from a variety of unusual and unfamiliar angles.

The conference is the brainchild of Dr Helen Kara: independent researcher, author, teacher, speaker and creative research methods (CRM) expert. Helen’s vision was to bring together the global CRM community to share knowledge, promote understanding, enable networking and have fun!

After the first day's keynote, I went to see Nicole Brown, a researcher looking at fibromyalgia, a condition that I also have. She had asked people living with fibromyalgia to collect objects to describe how the condition made them feel. One person had taken a photo of her chair - a really comfortable armchair, with a blanket, a table beside it holding drinks, snacks and distractions. This could have been a picture of my own living room! Due to chronic pain and fatigue I have what I call my 'nest'. I have reclining sofas with a side table with all of my remotes, chargers, creams, spare meds, thermostat, drinks, snacks, book, switch, lip balm (etc.) just so that everything I need is within reach and I don’t have to move too much or cause myself too much pain. I found the picture really impactful and saw the potential for objects, artwork and abstract thinking to be able to describe conditions like fibromyalgia which is extremely difficult to explain to someone who doesn’t have it. Using objects as data to assess and evaluate was really interesting and a methodology that I wasn’t previously aware of.

We were then given the task of picking some cards to describe ourselves as researchers.

These are the lego cards I chose to describe me during the sessions by Nicole Brown, who works with objects as data in research.

The skydiver because I feel like I just ask to do things and hope for the best, the singer because I like to present and talk about PPI (Patient and Public Involvement) in research. 

Black widow because she’s a superhero and fights for people who can’t and Rocket because he’s been made up with tech and I felt like he’s a disabled superhero :)

Jargon buzzing

On day 2 the Lawnmowers Theatre Company, run by and for people with learning difficulties, brought out jargon buzzers which were amazing! The characters pressed the buzzers every time someone used a term or word that they didn’t understand. I really want to use these in PPI meetings in the future, but we might not get anything done having to explain all the acronyms and research language that is often used!

Making a 'zine'

I didn’t know anything about zines and wasn’t aware of the Madzine project to help people with mental health conditions to explain how they feel, get things out and be creative. The session was really interesting giving us some history on zines before we were able to create our own. I made one about a project that I have been working on using some paper with stars on to represent the PPI Group members. A black page for accessibility as we all had different barriers to involvement and some of them were difficult to address, hidden or unknown. Some of the zines that they showed us were amazing: creative, visual, unusual, thought provoking and touching. They plan to create a mobile Madzine library that tours around the country so that people can read the zines and share in the experiences of the creators to increase awareness and understanding of living with mental health conditions.

Board games, rockpools and podcasts  

Kath McGuire (University of Exeter/NIHR School for Public Health Research), led our session talking about working with creative methods, public involvement and research dissemination. I briefly introduced the Fuse podcast and explained the collaborative approach to creating it. People were then able to take a look around the room at the variety of creative outputs that we had brought with us, and a video about how we have creatively communicated research in Fuse (see below). We had a snakes and ladders game to be used with PPI groups, or groups of researchers to evaluate their projects: snakes were barriers and challenges and ladders were successes and wins. We also took posters created by Fuse researchers showing their project results (Emma Adams) and Kath had a Blue Health Rockpool from another project. We took questions and explained how we created the podcast, what its impact had been and answered lots of technical questions about equipment, hosting and distribution. Hopefully accurately!

Attending the conference really broadened my view of research and public involvement. Lots of researchers at the conference felt that by making their work more creative it made it more inclusive. By reducing or removing established barriers to involvement such as language, terminology, education level and academic preconceptions they were able to engage with a wider, more diverse group of people. They could still be academically rigorous and produce research that stands up to peer review and meets publication standards whilst including more people, accessing people with appropriate lived experience of their topic of study and making involvement engaging, interesting and fun!

I have come away from the conference wanting to make Patient and Public Involvement meetings more creative, use games and objects to describe feelings and opinions, implement the jargon buzzer and design engaging dissemination methods that are relevant to the target audience of the study, drawing on the skills of the researchers and PPI teams.

A special thanks to Kath Maguire, Daniel Mutanda and Heather Boult (University of Exeter/NIHR School for Public Health Research), and the Fuse colleagues: Lesley Haley, who helped me with the podcast aspect of the workshop 'market place'; Ella Anderson for preparing the workshop activity; and Mark Welford for producing the Creatively communicating research video that we used in the session.

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