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Top research priorities for preterm birth: Results of a prioritisation partnership between people affected by preterm birth and healthcare professionals

Research output: Contribution to journalArticle

Sandy Oliver, Seilin Uhm, Lelia Duley, Sally Crowe, Anna L. David, Catherine P. James, Zoe Chivers, Gill Gyte, Chris Gale, Mark Turner, Bev Chambers, Irene Dowling, Jenny McNeill, Fiona Alderdice, Andrew Shennan, Sanjeev Deshpande

Original languageEnglish
Article number528
JournalBMC Pregnancy and Childbirth
Volume19
Issue number1
Early online date30 Dec 2019
DOIs
Publication statusPublished - 30 Dec 2019

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Abstract

Background: We report a process to identify and prioritise research questions in preterm birth that are most important to people affected by preterm birth and healthcare practitioners in the United Kingdom and Republic of Ireland. Methods: Using consensus development methods established by the James Lind Alliance, unanswered research questions were identified using an online survey, a paper survey distributed in NHS preterm birth clinics and neonatal units, and through searching published systematic reviews and guidelines. Prioritisation of these questions was by online voting, with paper copies at the same NHS clinics and units, followed by a decision-making workshop of people affected by preterm birth and healthcare professionals. Results: Overall 26 organisations participated. Three hundred and eighty six people responded to the survey, and 636 systematic reviews and 12 clinical guidelines were inspected for research recommendations. From this, a list of 122 uncertainties about the effects of treatment was collated: 70 from the survey, 28 from systematic reviews, and 24 from guidelines. After removing 18 duplicates, the 104 remaining questions went to a public online vote on the top 10. Five hundred and seven people voted; 231 (45%) people affected by preterm birth, 216 (43%) health professionals, and 55 (11%) affected by preterm birth who were also a health professional. Although the top priority was the same for all types of voter, there was variation in how other questions were ranked. Following review by the Steering Group, the top 30 questions were then taken to the prioritisation workshop. A list of top 15 questions was agreed, but with some clear differences in priorities between people affected by preterm birth and healthcare professionals. Conclusions: These research questions prioritised by a partnership process between service users and healthcare professionals should inform the decisions of those who plan to fund research. Priorities of people affected by preterm birth were sometimes different from those of healthcare professionals, and future priority setting partnerships should consider reporting these separately, as well as in total.

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