In 2021, Degree Apprentices Bryn Dunn and Luke Garland presented 'Predicting What Matters Using Big Data'.

This presentation, delivered to the Collaborating Centre for Values-Based Practice, based at St Catherine’s College at the University of Oxford, demonstrates the power of our innovative data platform, Prior Insight and how it can be used to inform shared decision making and improve the lives of autistic young people.

Predicting what matters using big data: Transcript

Good afternoon. We're going to be doing a presentation on predicting what matters using big data. So, my name is Bryn Dunn, I'm Luke Garland and we are both Digital Healthcare Apprentices at Prior's Court Foundation in partnership with the University of Warwick.

Okay, so a little bit about our apprenticeship. So our apprenticeship at Prior's Court is designed to include a combination of work placements across the organisation such as education, residential and therapy teams in order to gain experience and develop a broad understanding of operational processes undertaken to meet the needs of young people in our care. The majority of our time we spent with the team working on the Prior Insight platform with a primary focus on data mining in order to discover what can make the difference between a good day and a young person during a crisis. We are gaining this experience alongside our degree at the University of Warwick where we are provided with a breadth of scientific training oriented around the future of sciences. This involves developing high-level consultation skills using holistic evidence and values based approaches to share decision making, psychology, behavioral science and clinical physiology, all in conjunction to learning how digital technologies play an ever-increasing role in supporting health and well-being.

So Prior's Court is a registered charity founded in 1999 by Dame Stephanie Shirley that provides education and residential care for autistic young people with complex needs age 5 to 25, allowing them to live happier lives and build more independent future. The complex nature of the young people at Prior's Court requires information to be collected on every aspect of their lives enabling us to track the progress they make and informing us about how we can help them to achieve even greater outcomes, having more good days in the process.

In common with residential and specialty schools across the UK, Prior's Court historically relied on a number of paper-based data collection systems that made reporting and analysis difficult. It was therefore necessary to develop a digital solution that was able to record data across the whole organisation. This system is called Prior Insight. Now we are able to see inputs real time, create reports in hours which previously would have taken months to collate, analyze and interpret. This is completed using a software package accessed by tablets which are assigned to each student, optimized to provide quick inputs and comprehensive data. Day and night this enables us to use the data to inform evidence-based practice allowing the young people to have more consistency, happy days and better outcomes.

So how is Prior Insight being utilised so far? One of Prior Insight's first successes was with Otto. He's 14 years old and is autistic with severe learning disabilities in conjunction with other coexisting conditions such as neurological problems including issues with motor control, cognitive functioning, severe epilepsy. In particular severe epilepsy which can be extremely difficult to manage as you can have up to 20 seizures each day. So like many of the other young people, Otto's complex needs mean he requires individualised specialist care and support. By using information recorded on Prior Insight, staff quickly identified a trend for the Otto's behavioral incidents spiked in the lead-up to having absence seizures. Absence seizures are quite tricky to spot as they only last a couple of seconds. It can often look like daydreaming or staring off into space so they often go unnoticed. Now, with Prior Insight, staff are alerted when is behavior incidents increase so they can be extra vigilant for seizure activity. The result means they're able to provide even better care, more informed care on a daily basis so we have more good days and lead a happier life.

Okay, so how can the data be analysed be arranged to show trends individualized each student and thus prevent future incidents? As previously discussed, the young people at Prior's Court have complex and individual needs and many not be able to able express themselves or convey their thoughts or alert us to anxieties or needs. So, when we look at a young person such as Lara we saw somebody who loves swimming. However, one day, seemingly out of the blue, she started to refuse to go swimming. Her anxiety peaked around the time she would normally go to the pool and incidents would follow. The question was what caused this behavioral change. This happened before the implementation of Prior Insight and with the paper reporting, staff were unable to identify what or why this occurred. The result was two years of anxiety and anguish surrounding what used to be her favorite activity. The hope is that with a digitalised system, more data and data of greater quality can be collected such as this will be easier to understand and combat early on or even avoid. So with this new system we can have significant insight and profound use into non-verbal communication in order to improve quality of life so what else will be able to look into but we're still at the beginning of our journey.

Prior's Court and Prior Insight is still in its infancy but we are already beginning to look in how into how we can help young people on an individualised basis. For example, autistic people often have specific dietary requirements and intolerances and allergies are more prevalent in this demographic, up to four times that of a non-autistic individual. In conjunction with growing understandings of intricacies of gut microbiomes and with an increased knowledge and anxiety surrounding food in certain individuals we're hoping to develop a greater understanding of how we can improve well-being not only around meal times but throughout the day simply by looking at nutrition. Therefore with one of our first case studies here we decided to investigate a place where a young person had been identified to be displaying increased incidents in recent months we looked into the nutrition being provided by the staff to this individual considering his diagnosis with gluten and lactose intolerance and we looked into whether this correlated with the recent increase in incidents. As you can see by looking at the line graph here the trends for doing lactose and incidents will rise and fall together. Where there is one anomaly in February 2021, however, this can be explained by a number of transitions by the individual between home and Prior's Court. So we've utilised this insight into improving nutritional awareness across the sites and we are refining how dietary requirements are being input into the system. Going forwards more complex nutritional information will be available and deeper insight into how influence behaviors will be possible across the site.

Supporting values evidence-based practice. Prior's Court is made up of nearly 700 employees, each holding different ideals regarding what health and well-being needs and how this is upheld. As with many large organisations, maintaining high standards of practice are perhaps a challenging objective and consequently the values and approaches of the individual staff members can lead to difficulty in maintaining the necessary continuity and structure in the lives of young people, which must be sustained to reduce their anxieties. With the young people requiring round-the-clock care many different members of staff will work with each young person when a staff member works a young person they're not familiar with, Prior Insight provides a holistic summary of the young person's needs and recent behavioral patterns on a page titled 'this is new'. By providing up-to-date and informed data regarding individual needs directly to the tablets that remain with carers at all times, Prior Insight brings out the best of values and evidence-based practices and allows for higher levels of consistency and stability in young people's lives.

So finally reducing subjectivity and decision making with previous paper recording. There were a lot of missing data points and therefore some important decisions were being made predominantly subjectively without the use of any data. So while these decisions were often made in the best interest of young people, there can be many instances where in reality the reality might not necessarily align with the opinions of staff so this can potentially have an impact not only on the things that they like but also on their future and how their cases are handled by individual stakeholders and external stakeholders such as NHS doctors and local authorities and it can even impact where individuals might be placed once that time if Prior's Court comes to an end. Therefore with the development of persistent Prior Insight, we hope that it can be used to support more informed decisions to guide a better life and foundation for adulthood and independent living in the future and in addition to positively impacting life each and every day while they're here at Prior's Court.

Thanks for listening, thank you.

That's all from us.