AMIGO

The Centre for Systems Modelling & Quantitative Biomedicine (SMQB) is looking for enthusiastic individuals to support us with our public engagement and involvement work.

AMIGO stands for our Advisory Members Involvement, Guidance and Outreach group. This is a group of public volunteers who provide advice on how our research centre can best communicate with, engage and involve the wider public and patient groups in what we do.

Our AMIGOs have a wide variety of personal and professional backgrounds and expertise, ranging from those with lived experience of disease and healthcare conditions through to those with skills in teaching, marketing or charity work, for example. We are not asking for any specific expertise other than enthusiasm to be involved. AMIGO welcomes diversity and everyone’s perspectives are welcomed and respected.

Together we share an interest in making science more accessible to other people, so that research can become more transparent, relevant and meaningful to others, particularly those that the research ultimately hopes to positively impact.

AMIGO supports us to craft and deliver public engagement and involvement activity that is useful, enjoyable and mutually beneficial to all involved. We call our group AMIGO because the group is also a valued network of allies and friends passionate about improving the quality and societal relevance of research.

Interested in getting involved?

If you are interested in joining our AMIGO group we’d love to hear from you. Get in touch so that we can find out a little bit more about you and your motivations for taking part, as well as what type of volunteering would most interest you. Please contact our Community & Public Engagement Manager, Caroline Gillett on c.d.t.gillett@bham.ac.uk with ‘AMIGO’ in the title of your email.

AMIGO: Allies in Advocacy – the story of our two-day workshop

Allies in Advocacy

By Eder Zavala, Caroline Gillett & Isabella Marinelli

They say there’s nothing in the world more powerful than a good story. Nothing can stop it. Good storytelling can inspire people to action, create allyship and motivate change with everlasting effects. Science storytelling is one of the most powerful tools that every researcher can master, yet it is a skill for which little training is available. In the past two years, we have heard about the development of the Covid19 vaccines, the extraordinary deployment of the James Webbtelescope, and the vertiginous CRISPR revolution fixing genes inside the human body. Many other scientific revolutions are happening around us, silently waiting to break the news and inspire the next generation of innovators. At the intersection of biomedical and mathematical sciences, innovative collaborations are making strides in solving complex healthcare challenges. Often times, little is known outside selected circles about what mathematics can do for biomedicine, especially amongst patients, who after all are the ultimate beneficiaries of this interdisciplinary research. To address this, researchers at the centre for Systems Modelling & Quantitative Biomedicine (SMQB) organised the first Allies in Advocacy workshop. This event brought together mathematicians, computer scientists, and people with lived experience belonging to our Advisory Members for Involvement, Guidance and Outreach group. They are our AMIGOs. In this two-day event at the Edgbaston Park Hotel, our goal was to understand what does allyship mean for our communities, identify what are the barriers and facilitators for developing allyship, and learn how can storytelling help us achieve common goals in advocacy that ultimately transform people’s lives.

Allies in Advocacy - credit Hayley Salter-1120173
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The workshop started with a brainstorming exercise to define allyship which was immediately followed by an icebreaker activity to stimulate a dialogue between mathematicians and our AMIGOs. This consisted of a board game that helped drive a conversation about the barriers andenablers that both communities find in their journey. Shared reflections were exchangedafterwards, all while a graphic facilitator created a wall illustration in real time of the conceptsdiscussed during the event. We also had the support of an expert in science storytelling who,drawing inspiration from real world examples, provided us with useful tips on how to successfullycommunicate complex concepts to lay audiences. By the end of the day, all participants appliedtheir newly gained skills by playfully designing a mock public engagement plan, which was followed by an evening of resting, socialising, and a scrumptious dinner at the hotel restaurant.

Allies in Advocacy - credit Hayley Salter-1120026
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During the second and last day of the workshop, our AMIGOs and mathematicians teamed together to co-write creative Impactful Stories. Inspired by examples of research currently being conducted at the university, our workshop participants took on the challenging task of translating these impactful stories into short public engagement videos. These videos reflect four sets of quantitative techniques routinely used by researchers at SMQB, and now constitute a permanent resource which can be viewed below:

Video 1: Network Analysis (Epilepsy example)

Video2: Mechanistic Modelling (Diabetes example)

Video 3: Data-driven computational methods (Cushing’s example)

Video 4: Image analysis (Sight-loss example)

To make sure other groups can benefit from our workshop outcomes, we are also developing a “Best practice guidance” for PPIE activities that will help inform on what works, what doesn’t, and how to improve events that bring together members of the public, particularly patients, with researchers in the mathematical sciences.

AMIGO

Credits and special thanks to Hayley Salter for photography, Laura Brodrick for graphic facilitation and Jon Wood for videography.

Connecting to our mission: SMQB’s mission statement is to transform lives through quantitative biomedical and clinical research. We cannot achieve this vision without the input of many different stakeholders, some of which will have no background in quantitative methods or even science more generally. It’s therefore critical that we make efforts to bridge these gaps in understanding (whilst recognising that learning should always be two-way), creating opportunities to translate as clearly as possible how the techniques we use work, why they are appropriate and why in some circumstances they may offer more powerful ways to interrogate medical data.

In most cases, our work aims to “add value”, by providing rigorous information which can aid clinical decision making, not replace it. This is important to emphasize in particular for patients who may express concerns about how quantitative technologies could remove the human from patient-doctor interactions. 

Our Allies in Advocacy workshop was a step towards this goal. Through jointly undertaking training in science communication, public engagement and creative writing/filmmaking, we made no assumptions about who in the room needed to learn and instead sought to level the playing field. We also ‘shared our platform’ by encouraging lived experience voices to take the role of director, writer and/or instructor, talking viewers through a narrative explanation of the technique in question. We hoped this would make the videos much more relatable and less formal. We embraced the DIY element instead of the slick, corporate look that can be off-putting to some. We also created a friendly atmosphere to ask questions – both about the science and about people’s experiences of chronic health conditions.

So, what next? Well now we will use these videos as introductory material for future AMIGO patient involvement sessions (as new people continue to join the group), as well as a resource for students and other lay members of the public who inquire about our work. The videos will hopefully save us a bit of time, by allowing us to start conversations in future meetings and workshops at a slightly advanced stage. Moreover, they will allow lay representatives to come to conversations with more confidence, without requiring them to read loads of reading material. We also strongly encourage others to share the videos, if they are helpful in explaining the work they do. Even if the health conditions used are exactly what you focus on, they can provide a tool to understanding the technique and from there you can expand to provide your own example. So please, do share away!