Mechanisms that engage children and young people on the future of digital medicine

In this article we explore the potential for artificial intelligence in medicine with an underrepresented group; children and young people with lived experiences of healthcare. We broach a broad topic, using design thinking to open a new dialogue on intelligent human-computer interactions.
Mechanisms that engage children and young people on the future of digital medicine

Whilst we have witnessed an exponential interest in artificial intelligence (AI) and in the rapid adoption of digital technologies across healthcare during the pandemic period, this came at a time difficult time for many, also necessitating alternatives to traditional face to face workshops to be sought at pace to connect, consult and include a rich cross section of stakeholders. In this article, we report on an exploratory workshop that uses hypothetical design scenarios to engage with children and young people on the potential for AI in Medicine.

It is acknowledged that a research gap on involving children and young people in developing policies for AI exists. To this, UNICEF guidelines recommend participatory research with children, however there is little in the way of pragmatic and practical guidance for healthcare staff on this topic. It is this gap that these reported findings looks to contribute to, improve upon and provide recommendations to. 

Patient and Public Engagement and Involvement (PPEI) is a core component of Improvement Science, and so the outcome of this preliminary engagement workshop is to advise back to the healthcare community on agile and accepted mechanisms for involving CYP in the assessment and evaluation of key topics in Digital Medicine.

The Young Persons Advisory Group for Research are established to routinely provide feedback on
research ideas in paediatric care and forms part of a national network (Generation R). This work is supported by the NIHR GOSH BRC and this work was registered as a Quality Improvement project at Great Ormond Street Hospital for Children, with the intended outcome of involvement as an iterative mechanism to foster communication and collect insights to shape future research questions.

Great Ormond Street Hospital for Children (GOSH) is the largest paediatric centre in the UK and an international centre of excellence for many clinical specialties. As part of the hospital, the Digital Research, Innovation, and Virtual Environments (DRIVE) Hub aims to accelerate research and deployment of new technology including working with patients and families to optimise technologies such as AI.

Human Computer Interaction (HCI) is an interdisciplinary community, and field of study involving the design of new computer interfaces, the relationship and levels of acceptance users have with emergent technologies. There is growing interest in the impact of pervasive computing and artificial intelligence on societal issues and in healthcare. Such grand challenges, are amongst those being researched at UCL Interaction Centre (UCLIC).

This workshop looks to specifically answer whether Children and young people (CYP) who are members of Young Person’s Advisory Group for Research (YPAG) at a specialist childrens hospital in the United Kingdom, are interested in and are well placed to contribute to assessing and evaluating the potential for emerging technologies and AI in Healthcare and Medicine.

  • In this preliminary enagagment workshop, topics were presented using hypothetical design scenarios, derived, and adapted from the published literature.
  • We incrementally capture thoughts using an Audience Response System to capture feedback voluntarily, anonymously and importantly in their own words.
  • This is analysed using content analysis to present new ideas and concepts from CYP and carve future research questions.
  • We found that CYP want to be included to share their voice and insights about the development of research on the potential role of AI in medicine and healthcare. Governance, human centredness, and trust emerged as early themes, indicating potential aspects of AI in medicine that CYP may be interested to explore in further detail.
  • Whilst policy guidelines acknowledge the need to include CYP this ignores the infrastructure required to support ongoing digital cooperation.
  • For AI in medicine, this requires an enabling environment for human-centred AI that involves CYP with lived experiences of healthcare, clincians and AI professionals.

Our intention is to share preliminary findings on early enagagement, as we hope to spur deliberations on creating enabling environments that nurture participatory research.  We recognise and report on study limitations, but also accredit new engagement techniques for generating innovations in healthcare.

We intend to follow up with consensus building exercises and collaborate in earnest to identify the most important aspects to test and evaluate when involving CYP in PPEI initiatives on emerging technologies in healthcare. Therefore, we hope that with subsequent deliberations, this will form a series of recommendations and publications that reflect policy, healthcare and HCI perspectives.

Importantly, I, along with my fellow co-authors endeavour to place clinicians, patients and the public at the fore of academic research on emerging technologies in healthcare. To this, beyond conveying a patient voice, in this paper we co-author with a young person through the submission and revision process. Her response to the experience of participating and co-authoring in this study:

GOSH’S YPAG would love to be a part of the innovative project in their regular agenda, as well as, forming a specialised AI project and pilot group to progress AI developments within the healthcare system. For example: discussing the advantages and disadvantages of AI systems in healthcare, the ethics and becoming better informed by looking at the educational aspects of AI. Due to this, YPAG are essential to keeping both ideas and concerns up to date as AI develops. Overall, it is critical to keep CYP involved with AI, as they have been brought up with technology. CYP have lived and breathed technology and are the key to co-creation and AI’s future success in healthcare.”

Oceiah Annesely, YPAG member and co-author

Full article details are published in Engaging children and young people on the potential role of artificial intelligence in medicine