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4 The going digital study: ethical and legal considerations of young people accessing their digital health data – young people’s perspectives
  1. Pippa Sipanoun1,
  2. Prof Faith Gibson2,
  3. Jo Wray3,
  4. Kate Oulton4
  1. 1UCL Great Ormond Street Institute of Child Health and Great Ormond Street NHS Foundation Trust
  2. 2Great Ormond Street Hospital for Children NHS Foundation Trust and University of Surrey
  3. 3UCL Great Ormond Street Institute of Child Health, Great Ormond Street Hospital for Children NHS Foundation Trust
  4. 4Great Ormond Street Hospital for Children NHS Foundation Trust


Background An Electronic Patient Record (EPR) system was implemented at Great Ormond Street Hospital (GOSH) in April 2019. Young people aged 12-15 years old can have access, with their parents’ consent, to some of their health data via a patient portal called MyGOSH. From age 16 young people can, if they wish and have the capacity to do so, have sole access to MyGOSH. Young people and their parents can view their appointments, some of their health results, after visit summaries, and message their care team. We sought to find out young people’s views about ‘Going Digital’.

Methods The creative research methodology of a ‘World Café’ workshop was used with 26 young people aged between 12 and 18 from GOSH’s Young People’s Forum. By facilitating conversations that matter to the young people, topics significant to them about their digital health data and the digital transformation of GOSH were discussed. Small group conversations created a safe environment for the young people. Data were analysed using thematic analysis.

Results Important ethical and legal dilemmas were raised by the young people during the workshop: not wanting to be constantly reminded of their condition(s); worries about reading something inadvertently; assurances that their digital health data is safe; wanting to know who is looking at their health data; how the digital transformation will help them when transitioning to adult services; and a debate about the Mental Capacity Act 2005.

Conclusion ‘World Café’ methodology is an effective way to explore meaningful and sensitive topics in a supportive and safe environment, enabling young people to be able to voice what is important to them and why. Findings from this research will inform the shape of MyGOSH patient portal, and GOSH as a digital hospital, for the future benefit of all using it.

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