Category: News

JGI Seed Corn Funding Project Blog 2022-2023: Cheryl McQuire

Cheryl McQuire on behalf of the study team: Amy Dillon, University of Bristol; Prof Raja Mukherjee, Surrey and Borders Partnership NHS Foundation Trust; Prof Penny Cook, University of Salford; Sandra Butcher, National Organisation for FASD; Andy Boyd, Director, UK Longitudinal Linkage Collaboration; Beverley Samways, University of Bristol; Dr Sarah Harding, University of Bristol

Twitter: @cheryl_mcquire

What’s the problem?

Landmark UK guidance has called for urgent action to increase identification, understanding, and support for those affected by fetal alcohol spectrum disorder (FASD); but a paucity of national data undermines the feasibility of achieving this.

Tell me more…

Fetal alcohol spectrum disorder (FASD) is caused by exposure to alcohol in pregnancy. It is the most common non-genetic cause of lifelong disability worldwide. FASD is associated with problems with learning and behaviour and an increased risk of physical, mental health, substance misuse, and social problems. Prevention, early diagnosis, and support for people living with FASD, can improve outcomes and lead to societal cost savings.

In the UK, FASD is thought to be particularly common. A study in Manchester schools found that 2% of children had confirmed FASD, and 4% had possible FASD. UK health organisations have recommended urgent action to improve FASD prevention, diagnosis, and support. Publication of the National Institute for Health and Care Excellence (NICE) Quality Standard for FASD in 2022 sets the strongest precedent yet for improved prevention, assessment, and support for FASD.

In parallel, the UK government has called for a transformation in the way people’s information (data) is used to improve health. However, reliable and accessible data on FASD is not available. This makes it difficult to achieve important FASD research, policy, and healthcare goals.

A potential solution?

We believe that an important step towards addressing the FASD ‘data gap’ will be to produce the first UK National Linked Database for FASD. This would bring together de-identified FASD assessment records from NHS and private health settings that have not previously been available for research. These records would be stored in a trusted research environment, enabling researchers to use the data in way that protects people’s privacy. FASD records could then be linked to other population records including health, education, employment, crime, and social care. It would provide new insights into the characteristics and needs of people living with FASD, impacts and costs of FASD in the UK, and identify opportunities for improving outcomes.

What were the aims of this seed corn project?

This seed corn funding allowed us to take the first steps towards making a UK National Database for FASD a reality. We used it to establish the feasibility, acceptability, key purposes, and data structure of the first linked national research database for fetal alcohol spectrum disorder.

What did we do?

We spoke to over 100 stakeholders including clinicians, data specialists, researchers, policy makers, charities, and people living with FASD to find out:

1. What they want from a FASD database
2.  How this database could be used to advance policy, research and practice
3.  What UK data sources are currently available, and are due to become available, for FASD
4.  What data are commonly collected by FASD clinics
5.  What opportunities there are for standardisation/harmonisation of FASD data
6.  What should be considered in relation to ethical and data governance frameworks, data collation, transfer, storage, linkage, onward sharing and sustainability

To maximise engagement, we took a flexible and tailored approach, speaking to people using email/video conferencing and holding 1 in-person workshop to coincide with the UK Conference for FASD 2023 (Salford, March 2023).

What did we find?

There was strong support for a national FASD database. Charities and those living with FASD spoke of the benefits of increased awareness, understanding and support for FASD. Clinicians reported that the detailed clinical information provided on a national database could improve diagnosis, making assessment more efficient, potentially reducing long waiting lists. Researchers expressed enthusiasm for using it to better understand long-term outcomes, costs and opportunities for improved support. Policy makers identified clear alignment with current FASD and data transformation policy. The most common concern was around privacy and data sharing. The study team has been developing a data pipeline model to ensure that these concerns are appropriately addressed.

What’s next?

We are developing a ‘data pipeline’ model, in collaboration with representatives from FASD clinics and people working in secure data environments to take the initial steps in making the national database for FASD a reality.

We have clear plans for follow on funding, maintaining the strong, widespread, collaborations that we have developed and strengthened through this seed corn work.
We are presenting a summary of this public engagement work at the ADR-UK conference in November and have had this work accepted in the International Journal of Population Data Science.

Overall, this project has been invaluable in paving the way for progress in FASD in the UK. We hope to finally address this crucial FASD ‘data gap’ that has been stalling progress in prevention, understanding and appropriate support for too long.

JGI Seed Corn Funding Project Blog 2022-2023: Sydney Charitos & Lauren Thompson

Introduction

Due to the growth of self-tracking health devices, greater attention has been paid to how individuals view their health data. However, young children are often not the focus of these investigations. Instead, adult tools are applied and validated rather than starting from the children’s perspectives.

Aims

This project aimed to explore children’s views around visualising health data and to co-produce a set of designs/prototypes illustrating how health data can be better visualised for children. To do this, we are running a series of creative workshops with a class of 10–11-year-olds from a local school. We had both research aims and social aims throughout the project. These included:

Workshop 1:

Research Aim: Generate a range of data visualisations based on personas with invisible disabilities who represent ‘clients’. These personas represented children with different health conditions, with different motivations and requirements for tracking.

Social Aim: Educate the children about invisible disabilities, foster empathy towards the personas, provide healthy children with a broader understanding of the experiences of non-healthy children, and introduce the concept of co-design by involving them in the research process.

Workshop 2:

Social Aim: Teach the children to use BBC Micro:bits which are small electronic devices created to support children in developing electronics and computer science skills.

Workshop 3:

Research aim: Enable children to provide feedback and compare designs created by artists and academics interested in data visualisation. Subsequently, the children would create visualisations guided by designs based on their workshop 1 displays.

Social aim: Through comparison, children evidence and develop their skills of analysis and evaluation. These are higher-order processing skills which reflect a thorough understanding of the topic and are key steps on the way to intentional creation. Intentional creation is the ultimate goal as it evidences the full understanding of the context and application in education.

Workshop 4:

Research aim: Create a poster synthesising the children’s ideas into one display per persona.

Social aim: Children will show a full understanding of health data visualisation. They will do this by comprehending and responding to the three personas and adapting their ideas to those needs and preferences. This will show their ability to generate and adapt ideas when visualising health data and will be confirmed by their creation of a poster, on which they have also provided rationale for their choices – proving their consideration and conceptualisation. Children will furthermore work collaboratively, evidencing that skill of teamwork, to combine all of their ideas on each of the ‘clients’ into a singular large display. Through synthesising ideas, they will simultaneously evaluate and create in order to reflect their full understanding of both health data visualisation and how to adapt it to requirements.

Results

Since the project is still ongoing, we do not currently have results. However, we can share some displays that highlight interesting concepts. For more details, please reach out to us.

Future plans

After we complete all of the intended workshops, we will create a display to be placed on a wall at the school we have been working with. The children will then be able to show their work to their teachers, friends and parents. We intend to write up these results into a paper focusing on the methodology of the study as well as interesting and unexpected findings.

Contact details and links

Contact Sydney Charitos (sydney.charitos@bristol.ac.uk) or Lauren Thompson (lauren.thompson@bristol.ac.uk) for more information about the project.

JGI Student Experience Profiles: Ben Anson (Ask-JGI Data Science Support 2022-23)

Ask-JGI was advertised to my CDT by one of the staff members in the School of Mathematics. It sounded like a fun way to make the most of my MSc in statistics and get some ‘real world’ practice with statistics, all whilst doing my PhD! So, I applied, and it was one of the easiest application forms I have ever filled in. I was offered the job almost instantly and started 2 or 3 weeks after.

It has been really beneficial for me to chat with people from disciplines, e.g. biological sciences, psychology, education. It makes it much easier to understand the jargon from field to field (and hopefully it was helpful for them to understand more about data science), and gives interesting insights into what other research are up to. A lot of the statistics I’ve studied has been within a fairly theoretical framework, so it has been challenging and rewarding to see how this theory applies in practice. Queries are also quite varied, in the sense that some people know exactly what model they want to use, but want advice on how to perform inference, and other queries are about selecting the right method, or model, or even about framing their problem in a sensible way.

The work has spanned over many areas, I’ve worked on several queries from psychologists about how to fit models and/or test hypotheses for experiments they have run, and helping them explore ways of dealing with problematic datasets (e.g. missing data). I’ve helped analyse survey data from taught courses at the university, advised on how to process football sentiment text data, and discussed the best way to visualize results from non-destructive testing methods!

My experience of Ask-JGI has been mostly with statistics queries, but there are also queries about data visualization, data management, ML applications, etc, which are also super interesting. I’d recommend anyone who has experience in any of the above to apply, as the role is very varied and fits around PhD work.

JGI Student Experience Profiles: Vanessa Hanschke (Ask-JGI Data Science Support 2022-23)

I initially wanted to join the Ask-JGI because I thought it would be a great opportunity for me to keep my coding skills alive. I studied computer science and have worked in the data and AI industry for three years before starting my PhD in Interactive Artificial Intelligence. My PhD looks at supporting data science teams to reflect on the social impact of their applications through roleplay and although my technical background is helpful, I don’t actually write any code on a day-to-day.

The JGI experience definitely gave me opportunities to practise some coding, but it also gave me so much more. I was able explore all the interesting research work happening around the university, whether it was fish genetics, appetite psychology, analysing racist discourse or history video games. It’s inspiring to see the many different things researchers can do with data and how different their data sets look: qualitative data in the form of survey responses, hand curated excel sheets manually extracted from historical archives or long lists of numbers collected with environmental sensors. My biggest takeaway is that, because academia can be such a competitive environment, having a place that will give you constructive feedback and support is invaluable. It was very rewarding to facilitate connections between researchers who could collaborate or to provide a piece of advice or that little snippet of code that helped researchers become unstuck.

Another big highlight of being part of the JGI was participating in public outreach events such as AI UK in London or Bristol Data Week. It is such an exciting space and so much fun to speak to people who are just learning about data concepts and are curious to know if it will benefit their lives or if the perceived harms will manifest. The media buzz around data and AI means there is a lot of important work that needs to be done to both demystify the hype, while also opening up opportunities for people to be creative with the possibilities that data science can provide.

JGI Student Experience Profiles: Matt Chandler (Ask-JGI Data Science Support 2022-23)

Over the past year I’ve found my experience working with the Ask-JGI service really rewarding. I was keen to apply as I was looking for an exposure to the wider world of research being done at Bristol, which is something I have definitely achieved along the way. An aspect I was most surprised by was how relevant a lot of my previous experience in data analysis was, in topics very far removed from my own area of research. Whether it be statistics, coding advice, data ethics or visualization, data is data regardless of where it came from. And when things came up which I had not encountered before, having a team there with a range of different backgrounds made it a lot easier to get up to speed.

A part of the job I’ve most enjoyed was helping out with a range of events throughout the year. The highlights include assisting in the delivery of one of UKRN’s Train-the-Trainer workshops, working a stall at AI UK 2023 on sensing air quality, and the launch of the Ask-JGI Roadshow this year in which the team would visit departments across the university to have a more informal opportunity to engage with researchers about their data. A few of these conversations then lead to more in-depth assistance and advice. If you see an upcoming Roadshow in your department and have a question you would like answering (or even if you don’t!), I would definitely recommend going along.

The Ask-JGI team has made this year a really enjoyable experience. As a cohort, we’ve come together to deliver much better advice than any individual would be able to, and it means we’ve been able to rely on one another when our individual research projects took up more time. I would strongly recommend applying to anyone with even a vague interest in data science. It’s an amazing opportunity for development and networking, and allows you to immerse yourself in the wider community at Bristol.