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Aims Attending the paediatric emergency department (PED) and acute assessment units can be a daunting and stressful experience for patients and carers. We aimed to evaluate their experience of PED and acute assessment unit visits. Methods Data was captured using the validated RCPCH Patient Reported Experience Measure (PREM) for urgent and emergency care. This questionnaire was initially given out in 2013 and again in 2019 and included the views of patients, if over 8 years old, and/or carers. Completion of forms was voluntary and anonymised. In 2019 all respondents were offered the opportunity to take part in semi-structured interviews to explore their experiences in detail. Interviewees completed a questionnaire prior to the interview where they ranked the elements they most valued with regards to urgent care visits. This was used to scaffold the interview. Data was collected by 2 researchers, who transcribed verbatim, and by participants’ written reports. In 2019 data was collected over a three-week period. All data collection and analyses were carried out by individuals independent from the clinical team. Qualitative data was thematically analysed by four researchers. This was the second part of an audit cycle. Results In 2019 51 (18 involving patients) responses to the PREM questionnaire were collected and 12 interviews (4 involving patients) took place (20–30 minutes long). The majority described ED experience positively. From the PREM questionnaire key strengths included addressing pain in a timely manner and safety netting. Areas that need improvement include updates when waiting and advice on when to resume normal activities. From the interviews, communication and safety were identified as priorities. The provision of detailed information in a timely manner was highly valued, alongside feeling listened to by staff. Safety had three dimensions: physical, clinical and psychological/emotional. Waiting times and environmental factors also were valued but were less than other factors above. Conclusions Communication is highly valued, but improvements are required to provide contemporaneous information. This is congruent with existing literature highlighting parent disempowerment in acute care settings and underlining the importance of timely updates. Good communication improved carers’ feelings of psychological and emotional safety.

Aim Modernisation of records, coupled with advances in informatics, is making analyses of electronic records an increasingly rich source for researchers to help form evidence-based policy and treatments. We aimed to review the public’s views on health research from electronic records and databases, with a focus on children and young people (CYP). Method A literature search on the public’s perceptions of research from health records, data linkage, and acceptability of different modes of consent. Two focus groups using semi–structured discussions, to explore young people’s perceptions of access to healthcare data, were held with our Young Person’s Advisory Group. YPAG consists of 30 12–17 year–olds from diverse socio–economic and ethnic backgrounds. Results Published research is primarily in adults. There is widespread unawareness and misunderstanding of research using health records. The public wish to be informed when their data is used for research as a matter of courtesy and to allow control of their participation. Opt-in consent was preferred. Opt-out consent is deemed potentially acceptable, with some studies demonstrating increased acceptability when participation bias is explained. Only one study explored CYP’s views (17–19 year-olds). This broadly mirrored adults’ views, including attitudes towards opt-out consent. No studies were found involving younger adolescents. Our focus groups highlighted young peoples’ strong sense of ownership of their data and desire to be informed. Acceptability of access to data varies depending on exactly what is being used, by whom and for what purpose. A high degree of precision and flexibility in permission-granting was desired, alluding to dynamic consent. A distrust in the security of their data co-existed with a misunderstanding of the protection anonymization provides. Conclusion CYP are clear in their desire for active engagement when it comes to using their data for research and show appreciation for balancing one’s privacy against the ‘greater good’ for society. Further work is needed to explore how best to inform CYP of data use, allow informed participation, tackle misconceptions and maximise their partnership in this type of research. This is required to increase researchers’ transparency and accountability with the public and maintain public trust in clinical research.