Sawtell, Mary;
Van Blankenstein, Emily;
Bilal, Tahira;
Hall, Taralise;
Juniper, Lisa;
Kotsoni, Julia;
Lee, Juliette;
... Battersby, Cheryl; + view all
(2022)
Views of parents, adults born preterm and professionals on linkage of real-world data of preterm babies.
Archives of Disease in Childhood: Fetal and Neonatal Edition
10.1136/archdischild-2022-324272.
(In press).
Preview |
Text (Article)
Sawtell_Main Document.pdf Download (307kB) | Preview |
Preview |
Text (Supplementary Information)
Supplementary .pdf - Accepted Version Download (257kB) | Preview |
Abstract
OBJECTIVE: To explore views of parents of preterm babies, adults born preterm and professionals, on the linkage of real-world health and education data for research on improving future outcomes of babies born preterm. DESIGN: Three-stage mixed-methods participatory design involving focus groups, a national survey and interviews. Survey participants who expressed uncertainty or negative views were sampled purposively for invitation to interview. Mixed methods were used for data analysis. SETTING AND PARTICIPANTS: All data collection was online. Participants were: focus groups-17 parents; survey-499 parents, 44 adults born preterm (total 543); interviews-6 parents, 1 adult born preterm, 3 clinicians, 2 teachers. RESULTS: Three key themes were identified: (1) Data linkage and opt-out consent make sense for improving future outcomes. We found clear demand for better information on long-term outcomes and strong support for data linkage with opt-out consent as a means of achieving this. (2) Information requirements-what, how and when. There was support for providing information in different formats and discussing linkage near to, or following discharge from, the neonatal unit, but not sooner. (3) Looking to the future; the rights of young people. We identified a desire for individuals born preterm to be consulted in the future on the use of their data. CONCLUSION: With appropriate information provision, at the right time, parents, adults born preterm and professionals are supportive of data linkage for research, including where temporary identifiers and opt-out consent are used. Resources are being co-produced to improve communication about routine data linkage.
| Type: | Article |
|---|---|
| Title: | Views of parents, adults born preterm and professionals on linkage of real-world data of preterm babies |
| Location: | England |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1136/archdischild-2022-324272 |
| Publisher version: | https://doi.org/10.1136/archdischild-2022-324272 |
| Language: | English |
| Keywords: | This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions. |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Education UCL > Provost and Vice Provost Offices > School of Education > UCL Institute of Education UCL > Provost and Vice Provost Offices > School of Education > UCL Institute of Education > IOE - Social Research Institute |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10159050 |
Archive Staff Only
 |
View Item |
