ScotPEN

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Professor Sara Brown, University of Edinburgh: ‘2000 voices: using digital synthesis to amplify and explore patient experience’ 

Our diverse multidisciplinary team will amplify and explore the lived experiences of patients, families and carers affected by eczema. Experts in the fields of digital voice synthesis, art-science engagement and clinical practice will contribute to create unique opportunities for the communication of ideas and understanding. We will investigate and experiment with new ways to enliven the previously reported voices of eczema patients and carers, drawing upon approaches and methods from the arts and humanities, to reach a larger, more diverse audience and stimulate thinking and understanding in new ways. We intend to create an audio library of voiced patient experience as a digital resource. The project will explore the use of synthetic speech synthesis, which emphasises words and conveys emotions differently from the normal human voice, professional acting voice talent and the skills of sound artists, to find meaningful, thought-provoking ways to amplify lived experience. We will add additional voices from participants. We hope this work will be beneficial for those able to express themselves, as well as those who will have the opportunity to listen, think afresh and learn more about eczema. The work will be accessible to all ages and stages of life, including people with and without digital technology. Furthermore, there will be valuable opportunities for greater understanding and open communication between people living with eczema, those providing medical care, and those involved in eczema research. Together this will, we hope, represent a unique new forum for directing research towards improving care for people affected by eczema. 

 

Professor Annette MacLeod, University of Glasgow: ‘Parasite street science’ (Complete)

Parasite Street Science will tackle the serious issue of broken trust between scientists, health professionals and local communities affected by sleeping sickness in Malawi. We will work with local community members, scientists, medical practitioners/ health professionals and theatre practitioners in order to facilitate multi directional knowledge exchange. The community members we will work with will be those with lived experience of sleeping sickness. The project will create and tour a new interactive performance in Malawi. The performance style will be interactive outdoor work where the audiences are invited to directly participate in the performance in a familiar informal setting, rather than the passive engagement of watching a performance on a stage in an arts venue. The performances will, in their nature, be enjoyable and fun and will encourage direct interaction between the performers and the audiences. Performances will be supported by two digital elements ensuring a tangible legacy to the project: 1. An online interactive resource enabling further discussion between the public and scientists around new scientific information and ways of addressing sleeping sickness for show audiences and a wider online audience.  2. An interactive practical guide that leads scientists, local community members and theatre makers through the process of developing and performing their own similar public engagement performances The long-term goal of the project will be to improve trust, thereby increasing dialogue and awareness of diagnostics and treatment options, and ultimately drive down disease burden. 

To find out more, visit the project website

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Dr Benjamin Brennan, University of Glasgow: ‘What makes viruses tick?’ 

Ticks and the diseases they carry have become an increasing concern in Scotland with more people accessing the outdoors due to COVID-19 travel restrictions, coupled with a potential increase in the time ticks are active throughout the year due to climate change causing milder winters. In Scotland the largest threat from tick bites is currently Lyme disease with an incidence of up to 5% of ticks. However, given the recent emergence of Tick-borne encephalitis virus (TBEV) in the UK it is more urgent than ever to raise awareness of the dangers posed from tick bites. By raising awareness and engaging people about ticks and tick-borne diseases (TBDs) we aim to open dialogue and empower our audiences to make informed decisions about accessing the outdoors. During this project we will:-Co-develop a citizen science platform with The Conservation Volunteers (TCV) to open dialogue with people about ticks and tick-borne disease across Scotland.-Engage people who use the outdoors across Scotland with ticks and tick-borne disease through developing our network of outdoor organisations and local authorities. -Identify and engage with communities who are at-risk from ticks and tick-borne diseases who are digitally excluded. 

 

Dr Julie Welburn, University of Edinburgh: ‘The fabric of life’ 

Fabric and textiles used in everyday settings for clothing and furnishing provide a source of colour and tactile interaction, enhancing our personal environment. People use textiles in fashion as a mode of self-expression and personal identity carried with them in the public space. Eye-catching pieces of clothing have triggered many a conversation between strangers. Our goal is to develop a set of bright, engaging fabric prints that communicate our research, and express our enthusiasm for it. The fabric designs will be used to engage creatively with a range of audiences, including working with a quilting group, to produce a large, quilted artwork and working with youth groups to make tote bags and other wearables. We will initially design a set of cell-biology-themed motifs to be digitally printed onto crafting cotton. These “Fabric of Life” prints will be incorporated into tote bag and quilting project packs to provide the basis of our engagement with community groups. The project will evolve to include additional groups interested in design, printing and utilisation of fabrics. Project partners include teenagers interested in fashion design, minority groups with a cultural interest in textiles and groups of adults interested in quilting/crafting. By providing a context for researchers to engage in a crafting activity with these groups, we will facilitate quality interactions and longer-term conversations about our research with members of the public. Furthermore, by generating a physical product from this interaction, the engagement activity will gain an extended lifetime beyond the original interaction. 

 

Dr Annemarie Docherty, University of Edinburgh: ‘Exploring futures for Critical Care research’ (Complete)

Exploring futures for Critical Care research' goals: (1) Support dialogue between different ICU stakeholders around boundaries between research and care to influence our approach to ICU research in the future; (2) Generate evidence to support use of cultural probes for public engagement in health research. Cultural probes are used in design research to gather qualitative data about people's behaviours, values and thoughts. They take the form of interactive and thought-provoking tasks. In collaboration with design research studio 'Andthen', we will co-design probe tools with patients, relatives and researchers who work or spend time in ICU. The probes will be used to provide insights into experiences of ongoing ICU research and to capture preferences for ICU research in the future for us as clinicians, and for the people who contribute to our studies. Working with 'Andthen' and with probe participants, we will transform these insights into a public-facing installation about the future of ICU research. This will be a scalable output, that can be replicated in ICUs around the UK. We will also produce an insight report for professionals to guide them in person-centred approaches to data use and consent. We want the public’s help to find out the best ways to ask for consent and explain why we need it. 

Read the final report and project blogposts and view the project poster.

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Professor Katie Hampson, University of Glasgow: 'TRACE: tracing rabies and communities' experiences' (Complete)

This project will share the stories and voices of communities affected by rabies, bringing insights and understanding to policymakers, practitioners and other communities grappling with this deadly virus.

Long-term research and disease surveillance has led to the elimination of rabies on Pemba Island, Tanzania, and local engagement with contact tracing has played a vital role in this success. Researchers from the University of Glasgow and Ifakara Health Institute will create data visualisations that bring to life key research findings and the human stories behind them, and use these to consult with people directly affected by rabies and those involved in fighting it. Together they will incorporate individuals’ experiences to create an accessible, interactive platform that will help local communities influence rabies research, management and policy. The team will work with community leaders to share Pemba’s experiences, successes and challenges with decision makers and other rabies-affected communities in East Africa. These communities will feed in their own experiences of rabies, informing future research.

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Professor Pete Smith, (Lead: Dr Diana Feliciano/Dr Jennifer Wardle), University of Aberdeen: 'Food systems in a changing climate: from global to local'. (Complete)

Food systems contribute both to climate change and depletion of natural resources. Climate change can also affect adversely food production in many world regions. This can increase food prices, which can disproportionately affect lower income households and remote regions. This project engages S1-S2 school pupils and their communities in different locations in Scotland (urban, rural, remote) with the aim to investigate:

 

1. The origin of the food they eat.

2. The impacts of food consumption on the countries of origin (carbon, water, land footprints).

3. The role of local food production and consumption in the achievement of SDGs.

4. What local actions can be implemented to achieve the SDGs.

5. How to measure progress.

 

Pupils and their communities will design local strategies and actions that ensure sustainable food systems, i.e. those that promote health and wellbeing, have low environmental pressure and impact, are accessible, affordable, safe, equitable, and culturally acceptable.

To find out more, including Briefing Report from school engagement and Climate Change Handbook for school teachers, visit the project website

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Professor David Tollervey, University of Edinburgh: 'Prader-Willi superheroes'. (Complete)

Researchers from the Tollervey Lab will work with individuals with Prader-Willi syndrome (PWS), their family members and carers to collaboratively create pieces of artwork. These pieces will portray the experiences of living with PWS and embody participants' understandings of how biomedical research could influence their experiences in the future. The resulting artworks will be exhibited at the 2022 International PWS conference, alongside workshops encouraging attendees to use art as a vehicle to tell their own stories. After the conference, the exhibition, and a supporting comic book, will be available both online and in other public locations. The project aims to empower families to better access and understand research relevant to PWS and to have a voice about their experiences of living with the condition. It will increase public awareness of PWS through engaging artworks, and help researchers to better appreciate how their work connects to people’s lived experience of a genetic condition.

Read the digital comic book here.

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Professor Daan M.F. van Aalten, (Lead: Dr Michaela Omelkova), University of Dundee: 'Care to share'.  (Complete)

Professor van Aalten’s primary research explores the biological mechanisms underlying neurodegeneration (ND), and this engagement project aims to create a care package for ND patients. Through this project, Professor van Aalten will promote the use of interactive board games to facilitate informal relationships between researchers and the public. During board game sessions, round-table discussions will take place between the participating public, and researchers and health professionals. These discussions will be used as a basis for producing comprehensive ND community guidance and the care packages themselves. Before distribution to ND patients, the care packages will also be photographed and used as the basis for public exhibitions.

 

Dr Gemma Learmonth, University of Glasgow: 'Aging with impact'. (Complete)

Dr Learmonth’s research focuses on the effects experienced by stroke survivors. Her engagement project aims to directly include, involve and engage older adults in current research on the aging brain. In this 2 year project, Dr Learmonth and her team will host discussion groups with older adults to identify topics and research questions of importance to them. The participants will go on to co-produce research projects with postgraduate students that address these questions. The results, and other cutting-edge research about the aging brain, will be fed back to the wider community through outreach events. Researchers will gain experience and develop a template for co-producing research. This will benefit other researchers in the Institute of Neuroscience and Psychology who want to improve the real-world relevance and impact of their scientific research outputs. 

 

Dr Andrew Manches, University of Edinburgh: 'Move2Learn4Teachers: co-design of Early STEM training and resources'. (Complete)

Dr Manches’ research project, Move2Learn, investigates how interactive museum exhibits and informal learning can be used to promote improved enjoyment and understanding of STEM in children. This engagement project has been designed in response to continuous interest received from teachers; children and teachers will be engaged with STEM education providers and together, they will co-design materials that draw from and inform research. The physical outputs from this will be distributed to teachers to increase their knowledge and confidence, which in turn will result in better STEM education for children.

To find out more, visit the project website

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Professor Adele Marston, University of Edinburgh: 'New horizons in fertility research: why do some eggs not work?' 

Professor Marston’s project will focus on the biological processes that take place during human reproduction. Sculptural artworks will be displayed for patient groups in Edinburgh and Coventry and then later, to the wider public. This project aims to empower those experiencing fertility issues to ask questions and better voice their opinions. These artworks will be used to promote conversation between the public and researchers in a way that increases understanding, and this understanding will be used to improve experiences of IVF treatment.  

 

Professor Carmel Moran, University of Edinburgh: 'Imaging inside out'. (Complete)

Professor Moran’s project will involve engagement with early secondary school students in Scotland. Pupils will be given the opportunity to use hand-held ultrasound devices on 3D printed animal structures of different sizes and orientations. As ultrasound imaging is increasingly used in clinical diagnosis, this experience will promote the discussion of imaging techniques and the use of animal models; this will provide pupils with a better understanding of the use of each and give researchers the ability to understand what questions pupils may have on these topics.  

To find out more, visit the project website

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Dr Anna Pearce, University of Glasgow: 'Bridging the gap between health inequalities research and affected communities'. 

Dr Pearce’s Wellcome fellowship uses existing, anonymised data such as birth records, hospital admissions and child health checks to examine why children growing up in less-advantaged socio-economic circumstances live shorter and less healthy lives than their more-advantaged peers. Working with a Clydebank primary school and Children’s Neighbourhoods Scotland, Dr Pearce and colleagues will demonstrate how this research is currently conducted and how data linkage helps answer important questions safely. They will then explore what’s most important to the community themselves, and work with the children to identify, conduct and share the findings from a mini research project - with the children determining the direction of the project throughout. The team will conduct a detailed evaluation and will create and share a public engagement resource pack based on their learning. 

 

Dr Louise Ann Williams, University of Edinburgh: 'Pride against prejudice: exploring LGBT health through the Lothian Gay and Lesbian Switchboard archives'. (Complete)

The Lothian Gay and Lesbian Switchboard (LGLS) was the UK’s first gay helpline and Scotland’s first gay charity. Through Wellcome Trust funded research Dr Williams is cataloguing and selectively digitising archives created by LGLS; findings from this research will be disseminated to academics and the wider public. In this related engagement project, Dr Williams will work with local LGBT groups to create a public exhibition based on items collected from the LGLS archives and new works inspired by them. It is hoped that this will achieve wider collaborative engagement with community groups and demonstrate the power

of archives to stimulate discussion. View the online exhibition.

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Dr Megan McLeod, University of Glasgow: ‘Co-Immunicate: communicating immunity with the community’.

This project will involve a 4-year relationship with nearby Anderston Primary School. Dr MacLeod and her team will engage and inform primary pupils about immune cell communication and how this allows vaccine-induced protection to occur. The project is designed to empower pupils to design their own activities and displays. Pupils will use these activities to share their learning with younger pupils, the local community and the wider public at a series of events including annually at Glasgow Science Festival.

To find out more, visit the project website

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Dr Clarissa Melo Czekster, University of St. Andrews: ‘Antibiotics under our feet’.

New compounds from soil microbes could  be an important source of new antibiotics to fight drug resistant infections. In this project staff and students from the University of St Andrews will work with the local community to create a citizen science project. Teachers and Primary 5-7 pupils will sample soil near the targeted schools, with the results used to develop a fully accessible map of Scotland/Fife. The map will show where different species are found, their resistance to common antibiotics, and their potential for use in new treatments. The researchers and schools will also co-produce information and resources for use in schools involving DNA, microbes, antimicrobial resistance and antibiotic discovery.

To find out more, visit the project website

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Professor Sarah Cunningham Burley, University of Edinburgh & Professor Anne Kerr, University of Glasgow: ‘Tailored treatments for cancer: tales of research and care’. (Complete)

This project co-produced a graphic novel with people involved in developments of novel cancer treatments. Sharing the experiences of patients, carers, health care professionals, scientists and others will help convey the complexities of genomic medicine and the social and ethical issues it raises. The graphic novel format will help avoid language and literacy barriers and participants will be empowered to question, influence and advocate. During its development the novel was also used in workshops to help patients and carers produce their own short graphic stories based on their experiences.

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The project aims to enhance the ways that patients and others are engaged and considered in the process and outcomes of research. The graphic novel, patient stories and a short film are available at https://tailoredtreatments.wordpress.com and more information about the project can be found at https://ziggyswish.com/projects/tailored-treatments

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Professor Andrew McIntosh, (Lead: Dr Iona Beange) University of Edinburgh: ‘My depression, your depression - same name, different stories’. (Complete)

Professor McIntosh’s Stratifying Resilience and Depression Longitudinally (STRADL) project uses large datasets to investigate the causes and consequences of depression at a population level. However, this data-driven approach is not very effective at capturing individual differences. This public engagement project will enrich the research by using a person-centred approach – empowering those affected by depression to tell their stories in their own way by working with experts in digital and mental health storytelling. These stories will be shared with researchers, with policymakers and with the wider public at key exhibitions and events. As well as empowering participants to speak out about mental health, the project aims to help researchers understand and engage with the people and experiences behind the data. Researchers will also use the stories to bring participants’ voices to their discussions with policy makers.

To find out more, visit the project website

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Professor Sarah Reece, University of Edinburgh: ‘It’s about time! Malaria & mosquitoes on the road’.

In collaboration with the RAiSE project, scientists from the Reece Lab will engage rural school pupils with cutting-edge research to enhance science delivery, foster desire to better understand the living world, and show how science can tackle global issues. Malaria parasites and mosquitoes are continually adapting to their ever-changing world, and the daily rhythms of their behaviour are vital to understanding and treating the disease. Primary 4-6 children will conduct their own research projects on mosquitoes from their local environment and relate this knowledge to the role of mosquitoes in global health.

 

If you know of a rural school interested in a visit from the Reece Lab, please get in touch with them. Their website is https://thereecelab.com/on-tour and they are on twitter at @ReeceLab.