ORCHID Annual Report 2023 - Flipbook - Page 7
Highlights for 2023:
Dr Polly Livermore’s ACAF Award
My NIHR Advanced Clinical Academic Fellowship (ACAF) application proposed a study which
would design, develop and test a chatbot intervention for parents of children and young people
with rheumatological conditions. This was planned as a multi-phased, UK wide proof-ofconcept study inviting all paediatric rheumatology centres to be involved.
We decided to focus on parents as this may mitigate against some of the ethical issues with asking children
to type concerns into a technology intervention, and through doing so would hopefully improve the support
around the child. The study was based upon Experienced-Based Co-Design (EBCD) methodology and would
be guided by the MRC Complex Intervention Framework with four distinct stages.
I applied to the first ever round of this award and had an awful virtual interview in November 2022 as my
zoom application chose to use this day to keep consecutively crashing. Amusingly, this led to one of the
many panellists to ask 8You are proposing a digital intervention, how do you rate your digital skills?9 quite
ironic considering I couldn9t get the computer to behave that day! Amazingly though, I was successful and
feel incredibly honoured to have become the first and still only, successful nurse on this scheme across the
UK. My study began full time on the 1st April 2023 and is progressing really well, and (so far) on track! One
of the first tasks was to establish a Steering Group comprised of children, young people, parents/carers and
healthcare professionals who would be pivotal in helping shape and deliver the study. I have also been able
to employ two other GOSH staff on my study (Klaudia Kupiec (from the CRF) and Mark Harris (from QI),
both of whom are new to this type of research and are enjoying upskilling in new opportunities.
The first stage of this study was to conduct focus groups to understand the major challenges that families
face once diagnosed with a paediatric rheumatological condition. We aimed to recruit 42 children, young
people, parents/carers and healthcare professionals UK wide into these groups, however, we did not
anticipate the huge demand from families to be involved and needed to go back to ethics to increase our
potential recruitment figures. Through our dedicated website (www.theimpactstudy.co.uk) we had over 200
families reach out to us. We ended up with 161 participants in 26 focus groups, 9 of these were face to face,
the remaining virtual, delivered between 19th Dec 2023 and 9th April 2024. All but one of our twelve steering
group members joined us in delivering at least one focus group each. The child focus groups utilised an
interactive whiteboard and the third person vignette we discussed was a huge success with our young
participants. We are currently in the depths of data analysis, but have moved onto stage two to decide the
content of the intervention. We had our first creative world café methodology workshop in London with 65
participants. Each UK wide family group rotated round eight stations run by either our steering group or
technology partner, participating in activities such as our 8silent, persuasive whatsapp argument9 bubble and
our 8design a name and image for our chatbot9 station ran by the Teapot Trust Charity who kindly volunteered
to be there, all the way from Scotland.
I think I have to acknowledge the elephant in the room though, I was awarded the funding for my study the
week before ChatGPT was announced on the main news. This in itself presents challenges, but also some
positives – at least everyone now knows what a chatbot is, and what it can potentially do!
The ACAF has given me a huge opportunity to make a difference to children and young people, and their
families living with paediatric rheumatology conditions. The support we have had from families, charities and
other rheumatology centres across the UK shows the huge need for this intervention. Interestingly, the
findings we have found so far however are generally not specific to paediatric rheumatology, but instead
fundamentals of paediatric health care experience, which means that our final chatbot intervention may be
relevant to many other conditions and have the impact that is needed.
Digital profile:
ORCiD ID: 0000-0003-0824-3878
Google Scholar: https://scholar.google.com/citations?hl=en&user=SoMxHCMAAAAJ&hl=en
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