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Original research
Views of parents, adults born preterm and professionals on linkage of real-world data of preterm babies
  1. Mary Sawtell1,
  2. Emily van Blankenstein2,
  3. Tahira Bilal3,
  4. Taralise Hall3,
  5. Lisa Juniper3,
  6. Julia Kotsoni3,
  7. Juliette Lee3,
  8. Neena Modi2,
  9. Cheryl Battersby2
  1. 1 Social Research Unit, University College London Institute of Education, London, UK
  2. 2 Department of Primary Care and Public Health, Imperial College London, London, UK
  3. 3 NeoWONDER Patient and Public Involvement Group
  1. Correspondence to Dr Cheryl Battersby, Medicine, Imperial College London Department of Primary Care and Public Health, London, UK; c.battersby{at}imperial.ac.uk

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.

  • neonatology
  • qualitative research
  • intensive care units, neonatal
  • child development
  • child health

Data availability statement

Data are available upon reasonable request.

http://dx.doi.org/10.1136/archdischild-2022-324272

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    Data availability statement

    Data are available upon reasonable request.

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    Footnotes

    • Twitter @docevb, @NeenaModi1, @DrCBattersby

    • Contributors The study was conceived and planned by CB, MS, EvB, TH, LJ, JK, TB, JL. Interviews were conducted by CB, MS, EvB. Data were prepared by CB, MS, EvB. Analysis was conducted by CB, MS, EvB. The paper was written by CB, MS, EvB, NM, TH, LJ, JK, TB, JL.

      CB is responsible for the overall content as guarantor and accepts full responsibility for the finished work and/or the conduct of the study, had access to the data, and controlled the decision to publish.

    • Funding This study was funded through an NIHR Advanced Fellowship awarded to CB.

    • Competing interests CB is funded through an NIHR Advanced Fellowship personal award.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.