Harnessing digital technologies and informatics for childhood visual health

Background:
Good vision is important at every life stage and to all aspects of life, with vision in childhood being the foundation for visual function into adult life. Prompt recognition of, and intervention for visual problems is key to good visual and global health outcomes. Currently the UK lacks the whole population programmes of visual health surveillance which are necessary to support optimal visual development during childhood.[1] At the same time, there has been an emergence of community and patient facing technologies. Some of these technologies include aspects of visual health. Our group’s previous and ongoing work developing technologies which capture patient generated visual health data demonstrate the potential positive impact of such data.[2] This work includes child and family reported outcome measures, symptom tracking instruments, and rare disease ‘e-passports’. Other public facing tools, including the information on NHS choices (co-authored by our group) and the awaited digitised version of the Personal Child Health Record (directly informed by our group’s research) are aimed at helping parents to monitor normal childhood visual development. The effective implementation and integration of technologies which collect public and patient generated visual health related data would enable the development of a national childhood visual health surveillance programme.
Although the emerging technologies may empower children and their families as providers and users of their own vision-related health data,[3] there is evidence that current inequities may be magnified with increasing use of digital technologies and health information.[4] Our previous population based research has demonstrated that those from less advantaged backgrounds and those from ethnic minority groups all have higher odds of having impaired vision, with evidence of widening gaps over time.[5]

Aims/Objectives:
This PhD will focus on the generation of novel findings necessary to understand whether, and how, digital health technologies can be employed to improve the visual health of children in the whole population, and to achieve the best visual outcome for children with visually impairing conditions. This will include mapping the current digital visual health environment for children and their families and any intersection with electronic medical records; and identification of the barriers and facilitators for access to health information systems and health technologies, including exploration of issues around equity.

Methods:
The student will be trained in the skills necessary to deliver quantitative and qualitative research through:

• systematically mapping the health information landscape and lifecycle for visual health in childhood (up to the age of 19 years) in the UK, identifying intersections with digital health records including hospital electronic medical records and opportunities for future integration
• systematically reviewing the function, quality and inter-operability of existing child visual health digital technologies
• undertaking in-depth individual interviews with children/young people and their families to identify the perceived benefits and challenges they face in being providers and users of visual health data, digital visual health technologies, or technologies which aid management and monitoring of visually impairing conditions

References:
1. Solebo AL, Rahi JS. Vision screening in children: why and how? Ophthalmic Epidemiol. 2014;21(4):207‐209. doi:10.3109/09286586.2014.926557.
2. Rahi et al. An Age- and Stage-Appropriate Patient-Reported Outcome Measure of Vision-Related Quality of Life of Children and Young People with Visual Impairment. Ophthalmology. 2020;127(2):249‐260.
3. Academy of Medical Sciences (2018) Our data-driven future in healthcare. https://acmedsci.ac.uk/file-download/74634438.
4. Katz VS, Gonzalez C, Clark K. Digital Inequality and Developmental Trajectories of Low-income, Immigrant, and Minority Children. Pediatrics Nov 2017, 140 (Supplement 2) S132-S136.
5. Cumberland PM, Rahi JS, for the UK Biobank Eye and Vision Consortium. Visual Function, Social Position, and Health and Life Chances: The UK Biobank Study. JAMA Ophthalmol. 2016;134(9):959–966.