Author: theo.richardson-gool

Project links:

For further information for health professionals go to: FASD | Bristol Medical School: Population Health Sciences | University of Bristol

To download and share our video and materials go to: OSF | Improving Clinical Coding for Fetal Alcohol Spectrum Disorder (FASD)

The problem

Fetal Alcohol Spectrum Disorder (FASD) remains vastly under-recorded in electronic patient records in the UK. Although an estimated 2-4% of children in the general UK population and up to 27% of children in care are affected by FASD, few have this diagnosis documented in their medical records. This lack of proper documentation can lead to significant challenges for individuals with FASD and missed opportunities for better care, research, and policy-making.

Why accurate recording matters

Accurate recording of FASD in patient records is crucial for several reasons:

For people with FASD- Those with FASD expressed that the absence of FASD in their records often leads to “uncomfortable and unnecessary conversations” and makes navigating healthcare more challenging. Proper documentation would ensure that clinicians understand the need to provide care tailored to their needs.

This person with FASD explains: “I want them to note that I have FASD in my records. It won’t only just help me, it will help the other doctors as well to know to take things slower and explain things to me step-by-step”

For clinicians- Enhanced recording supports the implementation of the NICE Quality Standard for FASD, which is aimed at improving diagnosis and care pathways.

For data and research- Improved documentation would address significant gaps in data on FASD, enabling researchers and healthcare providers to better understand the prevalence and impact of FASD, ultimately leading to improved prevention and support strategies.

Addressing the issue: our knowledge mobilisation award

Led by Dr. Cheryl McQuire, James Parsonage, Amy Dillon and colleagues from the University of Bristol and beyond, we brought together a diverse group of stakeholders, including paediatricians, clinicians, data specialists, third-sector representatives, and researchers, to explore the barriers and facilitators to FASD diagnosis and recording.

The goal was to develop strategies for improving the uptake, consistency and accuracy of FASD coding in electronic patient records. These discussions, conducted through group and one-on-one online meetings, informed the creation of resources designed to promote the use of new SNOMED CT codes for FASD among clinicians.

Key focus areas for improvement

During the workshop, participants identified several critical focus areas for improving FASD recording:

Primary care emphasis- Targeting primary care records is essential due to their broad coverage, encompassing 63 million registered patients in England alone.

Clear guidelines- Summarise and provide easy access to the latest guidelines including those from the Scottish Intercollegiate Guidelines Network (SIGN) and the National Institute for Health and Care Excellence (NICE).

Updated clinical codes- Ensure materials reflect the latest SNOMED CT clinical codes for FASD (2024).

Actionable steps for clinicians- Provide clear actions that diagnosing clinicians and primary care teams can take to enhance FASD recording.

Lived experiences- Incorporate quotes and perspectives from people with FASD to convey the importance of proper recognition in medical records.

Consideration for devolved nations- Recognise that devolved nations, including Scotland are in the process of adopting SNOMED CT-based systems (expected introduction in 2025 tbc) and tailor materials accordingly.

Feedback from general practitioners

GPs interviewed for the project, particularly those less familiar with FASD, highlighted the need for accessible guidance and support. They noted that they would be more likely to document FASD if diagnosing specialists clearly outlined this action in clinical letters.

They also mentioned that other trained team members, not just doctors, often code diagnoses, underscoring the need for materials addressing the broader primary care team.

Creating impactful resources

With the insights from these discussions, we collaborated with a design partner to create a one-minute video (Above) and infographics featuring quotes (downloadable here) from individuals living with FASD and references to the latest FASD guidelines. These materials suggest clear actions for primary and secondary care teams to improve clinical coding practices. The Royal College of Psychiatrists and the National Organisation for FASD have endorsed these resources, which are available to view, download and share on our project website and Open Science Framework pages.

 

Spreading awareness and changing practice

The launch of these materials coincided with International FASD Awareness Month in September, a significant time for raising awareness within the FASD community. Our work aligns with the findings of the National Organisation for FASD’s recent report, “Not Commissioned: Systemic Confusion in NHS Services for Alcohol, Pregnancy, and FASD”, highlighting the need for systemic changes in FASD monitoring and care.

We aim to reach as many healthcare teams across the UK as possible through professional newsletters, networks, and governing bodies, ensuring these materials drive meaningful changes in clinical practice.

Acknowledgments

On behalf of the project team, I extend my sincere thanks to everyone who contributed to the workshop. This award has enabled us to take a significant step toward achieving what individuals with FASD want—recognition of their condition in clinical records and better understanding among healthcare providers. It’s time to acknowledge FASD in clinical records and ensure that everyone receives the care they deserve.

By James Parsonage, Amy Dillon, and Cheryl McQuire

James is a NIHR School of Public Health Research Pre-doctoral fellow with an interest in children and young people’s health

Amy is a Senior Data Access Manager at Bristol Medical School, specialising in electronic health record and administrative data linkage.

Cheryl is a Research Fellow in Public Health Evaluation at the University of Bristol Medical School.

Graphic designer, James Craker. For more information about his work go to: https://crackerjac.com/

On a sunny day in July in the midst of British summer, I teamed up with the brilliant Dr. Jordan A. Parsons from the University of Birmingham to put together a workshop on Artificial Intelligence (AI) in healthcare, exploring the ethical, legal, and social aspects. The event brought together a diverse group of individuals – from academia, policy, healthcare and the general public – all eager to explore these topics, with a particular emphasis on safeguarding within the framework of the UK’s National Health Service (NHS).

I introduced the workshop and delved into the ethical considerations of AI and robotics in healthcare. As AI becomes more integrated it’s important, that AI remains transparent, accountable, and aligned with human values. This topic resonated with me deeply, as I’ve always been an advocate for fairness and inclusivity in digital health.

“AI’s efficiency can sometimes reduce patient-professional interactions, potentially undermining safeguarding opportunities.”

Dr. Parsons added another layer to the discussion by focusing on safeguarding. He emphasised that safeguarding in healthcare is not just about the technical functionality of AI but also about protecting adults from abuse and neglect. Under the Care Act 2014, safeguarding is a duty for healthcare professionals, local authorities, and other public sector roles. He reminded us AI’s efficiency can sometimes reduce patient-professional interactions, potentially undermining safeguarding opportunities.

Mary Amanuel from NHS England spoke about the democratisation of AI, which I found particularly inspiring. The NHS Python Community and initiatives like the AI in Health Hackathon 2024 are pioneering efforts to ensure AI development is transparent and collaborative. It’s reassuring to see that the NHS is committed to making AI an augmentative tool rather than a replacement for clinicians.

The sociotechnical perspective shared by Dr. Carrie Heitmeyer from Government Office for Science was another eye-opener. AI systems, she argued, mirror societal hierarchies and values, and thus, their development should be inclusive and reflective of broader societal needs.

“It was a thought-provoking exercise to consider both the optimistic and pessimistic outcomes”

During the breakout sessions, we discussed the future of safeguarding within the NHS. It was a thought-provoking exercise to consider both the optimistic and pessimistic outcomes. One key takeaway for me was the realisation of how meaningful it is to involve diverse stakeholders in these conversations to ensure comprehensive and effective safeguarding measures.

The workshop concluded on a hopeful note, with participants currently developing a further funding bid to build a comprehensive understanding of how different stakeholders view the impact of AI in healthcare safeguarding and how to mitigate potential issues. This interdisciplinary approach is integral for creating ethical and effective AI systems. The knowledge gained from hosting the workshop were showcased at the Bath Clinical Advisory Group and the Institute of Medical Ethics National Conference 2024.

Reflecting on the event, one participant’s comment stood out: they noted it was the first time they had considered the need for obtaining permission from an adult experiencing abuse before reporting safeguarding issues. This is a crucial aspect often overlooked in computational models, underscoring the importance of interdisciplinary dialogue.

Overall, the workshop was a powerful reminder of the potential of AI in healthcare, tempered by the necessity of ethical considerations and safeguarding duties to ensure that these advancements benefit everyone.

By Matimba Swana

Matimba is a PhD student in the School of Engineering Mathematics & Technology and the Centre for Ethics in Medicine at the University of Bristol

Artist Hannah Broadway provided live illustrations during the session, capturing the essence and discussions visually.

 

Finding enjoyable, safe, and stimulating opportunities to be physically active can be challenging – especially for neurodivergent teenage girls who are often excluded from school and team sport activities. So how can we better understand and meet their needs? Is Nordic Walking a suitable activity? We conducted a participatory workshop to find out.

For the workshop, we involved 12 participants, including neurodivergent young women, professionals working in NHS mental health services, a charity supporting neurodivergent girls/women, a Nordic Walking instructor and University researchers in autism and physical activity. It was important for us to involve relevant interest groups in a way that would encourage ‘knowledge mobilisation’, i.e. individuals sharing knowledge to generate new insights and come up with solutions to current challenges. When planning this workshop, we focused specifically on making sure that we had a location and schedule that would reduce any potential sensory issues and gave participants freedom to engage how they wanted. For example, we encouraged participants to sit, stand or move, offered regular breaks and gave different options for contributing by drawing, writing or speaking.

When planning this workshop, we focused specifically on making sure that we had a location and schedule that would reduce any potential sensory issues and gave participants freedom to engage how they wanted. 

During the workshop, participants were encouraged to collectively think about what physical activity means for them, what challenges they face, how these can be solved and who should work together to improve community provisions for neurodivergent girls. We also included a presentation from an experienced Nordic Walking instructor, and the Lead for Children and Teens Education at the International Nordic Walking Federation, to highlight Nordic Walking as an alternative activity to more traditional (team) sports. Nordic Walking has shown some promise to improve confidence and movement skills, such as coordination, among neurodivergent children and young people. Whilst Nordic Walking is not yet a widely known activity, our participants were intrigued to learn more about what it is and encouraged us to continue to explore alternative activities that are suitable for neurodivergent youth. Based on their reflections, provisions should more frequently involve activities like walking, yoga, dance, swimming, climbing, horse riding, gardening and theatre. For us as researchers, it was very interesting to observe participants showing such nuanced understanding of how physical activity can involve any form of movement.

One of the most powerful insights was that physical activity in schools, for example during PE or in after school clubs, often does not (at all!) meet the needs of neurodivergent teenage girls. Echoey sports halls, smelly changing rooms and uncomfortable PE uniforms can cause sensory difficulties for neurodivergent pupils and create a sense of dread and frustration. Many also felt that school-based activities often come with a lot of pressure and fear of judgement. On the other hand, we learned that when physical activity is a choice and done without pressure or rules, it can be fun, help with brain fog, give time to think, “get the fizzy out” and create a “perfect flow”.

Participants felt that “neurodivergent advocates” should be involved in the design and delivery of activities

We encouraged our participants to jointly think about how to create more suitable, inclusive physical activity provisions. They were asked to collaboratively explore current challenges and use their shared knowledge to make recommendations. Participants felt that “neurodivergent advocates” should be involved in the design and delivery of activities and instructors should account for different skill levels and show acceptance when participants struggle. Also, personal space should be respected and smaller group sizes considered to help with social interaction. Unacceptable behaviour by other participants should be addressed and staff should be educated on the needs of neurodivergent youth.

Our participants’ experiences have helped us understand that focusing on creating suitable community provisions for physical activity, such as Nordic Walking, is valuable, however there are also many issues within school environments that warrant attention.

This knowledge mobilisation workshop also helped us understand who should be involved in creating better physical activity opportunities. Participants felt that neurodivergent people should work with the government, schools and activity providers to offer inclusive activities that suit their needs. In addition, networking between providers and schools should be facilitated and organisations like Wesport as well as NHS services for mental health and social prescribing should work with activity providers and neurodivergent advisors.

As a next step in our research, we are planning a bigger project that will involve neurodivergent teenage girls and their parents/carer as well as key organisations in physical activity and sport. We hope to continue to improve our understanding of what is needed to create suitable provisions to support the health and wellbeing of neurodivergent youth.

Reflecting on the workshop, our participants shared that they felt they were in a safe and open space that allowed them to engage with others in a meaningful way. We have profound appreciation for their willingness to share their experiences and want to continue to listen, understand and act with their needs in mind.

 

By Dr Kim Straun and Dr Miranda Armstrong

Kim is a Lecturer in Child Health, Nutrition and Physical Activity and Miranda is an Associate Professor in Physical Activity and Health.

What do sitting quietly at the theatre, the illicit trade of woolly mammoth tusks, a liver screening service with a brilliantly Bristolian name and an environmentally sustainable supercomputer in a car park have in common?   

They all featured in the interdisciplinary programme of talks at this year’s PHSI Symposium! 

To remind yourself of what you heard or find out what you might have missed, read Clare Thomas’ blog reflecting on some of the key learnings from the nine stimulating presentations.  

The day began with an introduction from Prof. Ellen Brooks Pollock which set the scene for the theme, “Interdisciplinary Perspectives on Population Health: Bridging the Gaps for a Healthier Future”. A day organised by Dr Gemma Crawford, we were treated to a programme of talks that really showcased the power of interdisciplinarity and the strength and diversity of University of Bristol’s work in population health.   

The opening talk from the Cleft Collective team described their work spanning almost 40 years to improve treatment and outcomes for babies born with cleft lip and/or palette. The Cleft Collective has amassed an extensive dataset including biological and genetic samples, and environmental, demographic, developmental, clinical and functional information. The findings of research using this data have been used to improve service delivery and treatment approaches in the UK, and the team are keen to foster interdisciplinary collaborations to conduct future research using the dataset.  

Next, Dr Kirsty Sedgeman, from the Department of Theatre, challenged us to think about what it means to act reasonably. Her work, which began with exploring the concept of “theatre etiquette” and what is considered reasonable behaviour amongst theatre–going audiences, found wider application in the context of the Covid-19 pandemic when the public found themselves trying to negotiate what behaviour was reasonable in the attempt to manage infection and risk. Kirsty also encouraged us to question power dynamics in decisions about reasonableness, by thinking about who the rules benefit and who they disadvantage. Finally, she highlighted the question explored in her latest book “How can we change the world if we’re afraid to be unreasonable?” and suggested there may be times when we need to be reasonably unreasonable!   

After a refreshment break we were asked by Dr Alex Tasker,from the Bristol Vet School, to consider how an outbreak of anthrax in reindeer in artic Russia becomes an issue of international health security, and were taken on a mind-blowing journey which included ancient woolly mammoth tusks, the international illicit ivory trade and an exploration involving diverse disciplines from Anthropologist to International Trade Lawyers, Arctic Warfare Specialists to Microbiologists, Climate Scientists to Historians and many more besides. Thus, highlighting the need for interdisciplinary approaches to solve complex problems involving risk and uncertainty.  

Following on, Dr Kush Abeysekera talked about his work on the early detection of liver disease, which, using data from the ALSPAC cohort, discovered that by age 24, 1 in 5 young adults have evidence of fatty build up in their liver (steatosis) and 1 in 40 have evidence of liver scarring (fibrosis). Sobering statistics which were sensationally reported in the Daily Mail as “the silent killer dubbed ‘human foie gras’”. His work, and connections made via social media, have led Kush to involvement in further research and initiatives aimed at increasing early detection of liver problems, including the brilliantly named “Alright my liver?” outreach team taking liver screening equipment out to the population of Bristol.  

In the final talk of the morning, the PHSI Knowledge Mobilisation (KM) team myself (Dr Clare Thomas) and Theo Richardson-Gool, encouraged the room to not just publish and hope that their research will make a difference, but instead take an active part in helping or making change happen. We also heard from three of our PHSI KM catalyst award holders, who described the stakeholder engagement workshops they have been planning on the diverse topics of; using chatbots to improve health, nordic walking for neurodiverse teenage girls and improving clinical coding for fetal alcohol spectrum disorders. Theo also shared insights from our recent KM survey in which more than 80% of researchers felt KM was relevant to their work but half felt they knew little about it. This is a gap in knowledge which the KM team are working to fill. 

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Posters

Thank you to all the poster presenters: James Olivier, Tanzeela Khalid, Katie Webster, Ettie Unwin, Andrew Turner, Anna Pathmanatham,  Neil Goulding, Alexandra Creavin, Nour Al Husein, and George Qian.

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Films

Nick Street curated brilliant films from inception to completion. The Q&A session prompted us to view film as a medium for effectively conveying messages. One valuable insight was the importance of maintaining focus in storytelling to ensure resonance and memorability.

The films covered diverse topics—from Historical Epidemics in Bristol with the Plague to Mitral Valve Disease and AvonCAP, offering insights into various clinical and research environments within the city.

A common thread among these films was their use of data to broaden audience reach and potential impact. Nick Street emphasised the importance of archiving these films for future use, stressing their standalone quality and advising against excessive content demands.

Below – an exclusive – Click to watch the films and tell us what you think! Mitral Valve Disease on Vimeo | Historical Epidemics on Vimeo| AvonCAP on Vimeo

           

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After lunch

The afternoon talks began with Saba Fasial, a PhD student and author of the Early Career Researcher prize winning abstract. Saba talked about a Patient and Public Involvement and Engagement (PPIE) project she undertook to understand barriers to consent for research recordings of clinical trial recruitment conversations amongst people from minority ethnic communities. Following focus groups with contributors from the South Asian, Somali and Chinese communities, Saba has worked to create short films explaining clinical trial methodology in five languages to help reduce language barriers and bridge gaps in understanding.  

Next up, Dr Kaitlin Wade provided us with an introduction to Mendelian Randomisation (MR) using research on the gut microbiome as an example. Kaitlin presented MR as a useful method in the epidemiologist’s toolkit, which can replicate findings of the “gold standard” RCT in a fraction of the time and cost, by using comparison groups defined by (randomly occurring) genotype. However, Kaitlin also cautioned that the limitations of the method are complex and there is a need for greater understanding of this. She went on to suggest that interdisciplinary collaborations and the opportunity to triangulate findings from MR studies with those from other studies exploring the same topic but using different methods would help to overcome biases within the different methods and allow more definite conclusions to be reached.

Dr Lucy Selman was next to take the floor to share the story of the Good Grief Festival, a movement to engage and support communities with bereavement. Lucy reflected on the impact of the pandemic which forced a change of plan for the first Good Grief event, from an in-person event in Bristol to an online event able to attract a wider national audience. The pandemic also put a spotlight on bereavement and loss, which led to coverage of Lucy’s work in the media, at home and abroad. Since its beginnings the Good Grief community has grown to include more the 30,000 members and 45 collaborator organisations and 2023 saw the first in-person festival Good Grief Weston, attended by 3,000 people. An evaluation of the festival found that more than 70% of respondents felt more confident talking about grief after attending.   

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Knowledge Mobilisation workshop

From the knowledge mobilisation (KM) angle, we learned much about what researchers are already doing to make impact happen and go beyond the publish and hope! Fifty-four people at the University of Bristol responded to our survey about KM, 80% of which rate KM as relevant or highly relevant, yet only 7% say they understand KM well. We aim to bridge this knowledge gap and continue listening and co-creating with those interested and invested!

Ten participants joined a KM workshop to explore interdisciplinary collaboration within the Health and Life Science Faculty Grand Challenges. Workshop discussions highlighted the need to engage non-academic partners to ensure research meets diverse community needs and aligns with policymaker priorities on mental health and chronic diseases. Research accessibility, ethical engagement with vulnerable populations and the potential benefits and challenges of industry collaboration in the context of the Grand Challenges were explored. The workshop also provided a valuable space to meet new people and start new interdisciplinary conversations. 

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Plenary Talk

Last, but most definitely not least, in the final session of the day we heard from Dr Sadaf Alam, Director of Advanced Computing Strategy at Isambard-AI, the UK’s fastest supercomputer, funded by the UK government and hosted by the University of Bristol. Sadaf spoke about the speed at which the facility to house the supercomputer, in the car park of the National Composites Centre, had been constructed (despite the incessant rain!), how the first phase of the supercomputer hardware installation is complete and work on the user interface and access procedures are well advanced. Sadaf was excited to share the potential for population health that access to this facility will bring and that priority access for University of Bristol staff will soon be available, so watch this space! 

“I certainly came away from the day with a head buzzing from all I’d seen and heard” – Clare Thomas. “I gained a new appreciation of what can be gained by stepping outside our own disciplines to embrace the different perspectives which come from others and gratitude for the opportunity to get away from my desk to meet new and interesting people!” 

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Report on talks by Dr Clare Thomas

Report on the films and posters by Helen Russell 

Reflection on knowledge mobilisation by Theo Richardson-Gool

A Researcher Carrying a Feeling That I Should’ve Done More: My Journey To Knowledge Mobilisation

By Dr Clare Thomas

My interest in knowledge mobilisation (KM) started when I was a PhD student almost 20 years ago, except back then I didn’t have a label for it and I didn’t know how to do it! My PhD involved developing an intervention to support women make decisions about childbirth after previous caesarean section. It was a success by academic standards; I published several papers, presented at conferences, and secured myself a great post-doc position. But I was left with a nagging feeling that I should’ve done more to make my effective intervention available for women to use. I made a couple of attempts to find an implementation route, but didn’t get very far, and I had to move on with my next research project.  Though that nagging feeling stayed with me.  

In the intervening years, recognition of the importance that our research isn’t just an academic success, but also makes a difference in the “real world” has been growing. The funders of both health research and higher education institutions as a whole are asking us to demonstrate the impact of our research alongside our citation counts. Growing too is the belief and the evidence-base that KM is a route by which that impact can be achieved.   

In 2019 I was given the opportunity to develop my nagging feeling into action when I was appointed to KM and implementation roles at the NIHR Health Protection Research Unit in Behavioural Science and Evaluation and NIHR ARC West. In these roles I have been fortunate to work alongside Bristol-based trailblazers in KM, Lesley Wye, Helen Baxter and Sabi Redwood. I have learnt so much from them and from many others. I have also supported projects which have made a difference, for example, to the delivery of harm reduction interventions amongst people who inject drugs, and to the uptake of HPV vaccinations in schools.  

In my current post in the Population Health Science Institute, alongside Theo, we are aiming to raise awareness of KM and support the population health research community in Bristol to think about it more and do more. We appreciate this is not an easy ask for researchers, it requires time and resources they very often don’t have and skills and confidence they are yet to develop. But we are trying to capitalise on the momentum and passion for making a difference that already exists in our research teams and we hope many will join us.  

I will close by sharing some KM lessons I have learned along the way: 

• Take every opportunity to connect and expand your network. A connection might not be useful to you right now, but it may be in the future 
• Acknowledge there is often an element of luck to generating impact, but knowledge mobilisation can help increase your chances of being in the right place, with the right people, at the right time to make change happen. 
• If luck doesn’t go your way, and you don’t have the impact you hoped for, then celebrate and place value on the efforts you made, the lessons you learnt, the people you met and how these will help you have greater success next time.