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.

A public partner’s guide to podcasting

Posted by Victoria Bartle, Fuse Public Partner, with tips for guests from Cassey Muir, Fuse & NIHR School for Public health Research (SPHR) funded PhD Researcher from Newcastle University

Everyone seems to have a podcast these days and there are lots discussing research, but how many can say that they are totally led by the public? I have been participating in public involvement in research since 2016 and believe that it is a vital part of improving everybody’s health, but find that getting other people involved and informing the public about research projects is really difficult.

I was excited to be involved with the Fuse podcast Public Health Research and Me as I’ve wanted to start my own for a while now, and felt as if this would be a perfect opportunity to learn about podcasting and give it a try, as well as being part of creating a platform to help engage the public in research and hopefully increase awareness and involvement. I joined the podcast team made up mainly of other public partners and took part in some excellent training which went through equipment, hints and tips for selecting guests, how to phrase and deliver questions, different podcast formats, as well as recording and editing. I was buzzing after the training and keen to get started.

 

I was lucky enough to be selected to be the first host for the podcast and was matched with Cassey Muir, one of the Fuse researchers who is working with children and young people who have been affected by parental substance use. Her work is fascinating and I was soon enthralled reading everything I could to prep for the interview and come up with a very long list of questions. As brevity is not my forte the rest of the team helped to cut these down to around five or six questions which is about all that you need to create a 30 minute podcast.

We then had a pre-record meeting with Cassey, where we discussed the questions. Talking to her about her work helped me to edit and refine the questions for the interview. Once the questions had been finalised and approved by the podcast team and Cassey, we set a recording date.

I was quite nervous before the record. I’d been a panel member on a podcast before and had so many technical issues that I was really stressed and anxious by the time I managed to get everything sorted. So for this recording I made sure I had tried all of the equipment and was all set up with my notes, drinks, tissues and cough medicine…because of course I had a cold! Recording when one of the presenters keeps coughing is really difficult for the editor, but Cassey was a pro and kept pausing whenever I coughed so that we would have a second or two to edit it out. We talked for ages and the record went really well. I was able to bring in some of my own lived experience of the topic and this helped to make the conversation more natural and less like me firing questions at Cassey, although I did say “wow” and “that’s amazing” a lot which I was determined not to do as much the next time.

Now to the technical part! Although we had had some training on editing podcasts, the team decided to use an external editor as we wanted it to sound as professional as possible, and none of us were confident in using the software just yet. Listening to the edited version we were able to make requests for changes, but I felt that it generally sounded great, and asking to cut out all of my embarrassing “wows” was my own issue and not necessary. We had to write our bios to go with the podcast, an overview of what it was about, and make sure that the projects and references that we discussed were all available for the listeners to link to directly from the podcast page.

Going live was exciting, I sent the link to all of my friends and family, it was tweeted on the Fuse twitter feed and is also on the Fuse website so everyone can access it. We’ve had over 100 listens and the bonus video has had nearly 300 views so far. I’ve had lovely feedback from my friends and family who said they found it really interesting. My Mum was especially impressed as she now has something that she understands to tell people when she’s trying to explain what public involvement in research is and what I do.

Round two  

The second recording went a bit differently. I had loads of background information to read about Eugene Milne, his career history, his involvement in establishing Fuse, his role in public health and his recent MBE which was all very exciting. I had lots of questions about all of the different projects that he had been involved in, their impact on public health in the North East, as well as his plans for retirement, but during the pre-record chat I decided to take a more focused direction as his responses to some of the topics were just so interesting. We narrowed it down to his involvement in establishing Fuse, what his initial expectations were and how he feels it has developed over the past 15 years; the impressive results from the public health initiatives that he oversaw (including North East tobacco and alcohol control programmes Fresh and Balance); as well as responding to Covid-19 during his time as the Director of Public Health for Newcastle.

Again the public partner team reviewed the questions and the theme of the podcast and we went ahead with the recording. This time I didn’t have a cough which made recording much easier, but I still responded with lots of “wow’s” and “that’s amazing” as I found Eugene very engaging and his career so interesting. I then got myself a bit confused towards the end of the record. I’d skipped a question as it didn’t fit with how the conversation was flowing, but I wanted to come back to it at the end. I’d already said the outro lines so I had to pause for a second or two, ask the missed question, and then remind the editor to swap the order of the last two sections around. I was a bit embarrassed about this, but it was absolutely fine and you can’t tell in the final version.

Things don’t always go to plan

The third recording with PhD student Joanne McGrath has been different again. We had already decided to focus on one of Joanne’s current projects looking at women experiencing homelessness as it fitted in with International Women’s Day and an event that Fuse was hosting for the occasion. This meant that I had a bit less reading to do while prepping the questions this time. They were approved by the podcast team and Joanne, and she steered the direction of the podcast from the outset as she knows her research best and which areas are being focused on currently. The recording has been beset with challenges, technical issues, diary clashes and unavoidable life events that have meant that we have had to postpone the recording three times. Is it cursed!?

These challenges actually led us to writing this blog, as well as the hints and tips below. We have all learnt so much from the first three podcasts and as I pass the hosting responsibilities to the next public partner we wanted to make sure that we were learning from our experiences. At the point of writing this blog, we have now managed to record Joanne’s episode, so keep an eye out for it. Her work with women experiencing homelessness is so important and will benefit an often overlooked group of people by supporting positive changes in their lives.

Our top tips for podcasting

For hosts

Preparing for the podcast:

• Give yourself enough time to read through all of the guest’s work and discuss with them and the team the possible theme of the interview.
• Write down all the questions you can think of; you can always edit and rearrange the order later.
• Have a pre-record meeting with the guest; this helps you and your guest to feel comfortable, and to try out the microphone and recording platform. This can also help to define the questions and theme of the podcast.
• After the guest and the team have reviewed the questions and decided on five or six to use, arrange them in an order that should flow like a conversation.
• Write your own intro, a couple of sentences about yourself to introduce you to the listeners and practice this a few times so that you are familiar and comfortable saying it.
• Also practice the intro and outro sections that have already been created, changing some of the words if it fits better with how you speak.

The podcast recording:

• Login to the meeting for the record early, have everything you need set up around you, and make sure you have all devices on silent so you won’t be disturbed.
• Check the mic in advance, you may need a USB port to attach to your computer and headphones with a connector jack. If you use an Apple Mac (or similar) you may have to use a USB adapter.
• Place the mic approximately 15cm (6”) in front of you.
• Find a small quiet room that is preferably well furnished to absorb any echo.
• Have a little chat with the guest, try to make them feel comfortable and start when you’re both ready.
• Mute yourself if you need to cough, sneeze or drink etc.
• Avoid rustling any paper or notes that you may have prepared.
• Turn off non-essential devices using wifi and reduce the tabs/windows on your device. This will reduce the likelihood of buffering during the Zoom/Teams call.
• If you do cough, sneeze or make a mistake then pause for a second or two and start again (or mark by saying “edit point”), this gives the editor a space to remove the noise.

After the recording:

• Re-record any sections you feel necessary, or let the team know if you think a section will need to be moved, cut or edited and they can pass this on to the editor.
• Once the edited version comes back, with the “umms”, “aaahhhhs”, coughs (etc.) removed, you will be able to listen through and request any further edits that you’d like.
• Write a bio and provide a photo to go on the podcast platform.
• Help with any promotion through your own networks, and enjoy listening!

For guests

Preparing for the podcast:

• Identify and share your relevant publications, resources, and information with the host and podcast team, which allows them to focus the conversation and questions (e.g., do you want to provide a wide variety of resources or only those on a specific topic?).
• Help clarify any specific points of interest or themes you would like to get across about your work as this will help with determining relevant questions.
• Pre-record meetings and/or emails are helpful, which can take away some of the nerves by building a relationship with the host or testing out the equipment.
• Ask for a copy of the questions if you would like to make notes and think about your answers ahead of time.

The podcast recording:

• This should be/is a fun experience where you get to talk about your work with someone who is keen to listen and explore different topics with you. It is a great chance to discuss your research in a way that you might not normally and possibly from a different viewpoint, so try to ease into it and enjoy it. If you lose your train of thought or stumble over your words it is okay, that is the benefit of editing and not being live.
• If you have made them, have your notes to hand, either printed (but not rustling) or on the screen to help you remember important points that you want to make during the podcast.
• As this is meant to be somewhat conversational, remember to go with the flow of questioning as some of your answers may spark interesting follow-up questions that you are unprepared for.

After recording:

• Ensure you have provided links to the important items you discussed during the podcast, which can then be shared alongside the podcast.
• You get to listen/watch through the edited podcast before it goes live, which is your chance to highlight any changes you would like to be made (although the editing team do a fab job, so there may be no necessary changes at this stage).
• Once the podcast is live, this is a great opportunity to share your work and the podcast with relevant networks and/or on your social media.
• Enjoy listening or watching the podcast!