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

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...

Full description

Bibliographic Details
Main Authors: Oliver, S, Uhm, S, Duley, L, Crowe, S, David, AL, James, CP, Chivers, Z, Gyte, G, Gale, C, Turner, M, Chambers, B, Dowling, I, McNeill, J, Alderdice, F, Shennan, A, Deshpande, S
Format: Journal article
Language:English
Published: BMC 2019
_version_ 1797098027438047232
author Oliver, S
Uhm, S
Duley, L
Crowe, S
David, AL
James, CP
Chivers, Z
Gyte, G
Gale, C
Turner, M
Chambers, B
Dowling, I
McNeill, J
Alderdice, F
Shennan, A
Deshpande, S
author_facet Oliver, S
Uhm, S
Duley, L
Crowe, S
David, AL
James, CP
Chivers, Z
Gyte, G
Gale, C
Turner, M
Chambers, B
Dowling, I
McNeill, J
Alderdice, F
Shennan, A
Deshpande, S
author_sort Oliver, S
collection OXFORD
description 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.
first_indexed 2024-03-07T05:03:47Z
format Journal article
id oxford-uuid:d93a125d-541e-4b19-9299-51ad60c93421
institution University of Oxford
language English
last_indexed 2024-03-07T05:03:47Z
publishDate 2019
publisher BMC
record_format dspace
spelling oxford-uuid:d93a125d-541e-4b19-9299-51ad60c934212022-03-27T08:54:31ZTop research priorities for preterm birth: results of a prioritisation partnership between people affected by preterm birth and healthcare professionalsJournal articlehttp://purl.org/coar/resource_type/c_dcae04bcuuid:d93a125d-541e-4b19-9299-51ad60c93421EnglishSymplectic ElementsBMC2019Oliver, SUhm, SDuley, LCrowe, SDavid, ALJames, CPChivers, ZGyte, GGale, CTurner, MChambers, BDowling, IMcNeill, JAlderdice, FShennan, ADeshpande, SBackground 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.
spellingShingle Oliver, S
Uhm, S
Duley, L
Crowe, S
David, AL
James, CP
Chivers, Z
Gyte, G
Gale, C
Turner, M
Chambers, B
Dowling, I
McNeill, J
Alderdice, F
Shennan, A
Deshpande, S
Top research priorities for preterm birth: results of a prioritisation partnership between people affected by preterm birth and healthcare professionals
title Top research priorities for preterm birth: results of a prioritisation partnership between people affected by preterm birth and healthcare professionals
title_full Top research priorities for preterm birth: results of a prioritisation partnership between people affected by preterm birth and healthcare professionals
title_fullStr Top research priorities for preterm birth: results of a prioritisation partnership between people affected by preterm birth and healthcare professionals
title_full_unstemmed Top research priorities for preterm birth: results of a prioritisation partnership between people affected by preterm birth and healthcare professionals
title_short Top research priorities for preterm birth: results of a prioritisation partnership between people affected by preterm birth and healthcare professionals
title_sort top research priorities for preterm birth results of a prioritisation partnership between people affected by preterm birth and healthcare professionals
work_keys_str_mv AT olivers topresearchprioritiesforpretermbirthresultsofaprioritisationpartnershipbetweenpeopleaffectedbypretermbirthandhealthcareprofessionals
AT uhms topresearchprioritiesforpretermbirthresultsofaprioritisationpartnershipbetweenpeopleaffectedbypretermbirthandhealthcareprofessionals
AT duleyl topresearchprioritiesforpretermbirthresultsofaprioritisationpartnershipbetweenpeopleaffectedbypretermbirthandhealthcareprofessionals
AT crowes topresearchprioritiesforpretermbirthresultsofaprioritisationpartnershipbetweenpeopleaffectedbypretermbirthandhealthcareprofessionals
AT davidal topresearchprioritiesforpretermbirthresultsofaprioritisationpartnershipbetweenpeopleaffectedbypretermbirthandhealthcareprofessionals
AT jamescp topresearchprioritiesforpretermbirthresultsofaprioritisationpartnershipbetweenpeopleaffectedbypretermbirthandhealthcareprofessionals
AT chiversz topresearchprioritiesforpretermbirthresultsofaprioritisationpartnershipbetweenpeopleaffectedbypretermbirthandhealthcareprofessionals
AT gyteg topresearchprioritiesforpretermbirthresultsofaprioritisationpartnershipbetweenpeopleaffectedbypretermbirthandhealthcareprofessionals
AT galec topresearchprioritiesforpretermbirthresultsofaprioritisationpartnershipbetweenpeopleaffectedbypretermbirthandhealthcareprofessionals
AT turnerm topresearchprioritiesforpretermbirthresultsofaprioritisationpartnershipbetweenpeopleaffectedbypretermbirthandhealthcareprofessionals
AT chambersb topresearchprioritiesforpretermbirthresultsofaprioritisationpartnershipbetweenpeopleaffectedbypretermbirthandhealthcareprofessionals
AT dowlingi topresearchprioritiesforpretermbirthresultsofaprioritisationpartnershipbetweenpeopleaffectedbypretermbirthandhealthcareprofessionals
AT mcneillj topresearchprioritiesforpretermbirthresultsofaprioritisationpartnershipbetweenpeopleaffectedbypretermbirthandhealthcareprofessionals
AT alderdicef topresearchprioritiesforpretermbirthresultsofaprioritisationpartnershipbetweenpeopleaffectedbypretermbirthandhealthcareprofessionals
AT shennana topresearchprioritiesforpretermbirthresultsofaprioritisationpartnershipbetweenpeopleaffectedbypretermbirthandhealthcareprofessionals
AT deshpandes topresearchprioritiesforpretermbirthresultsofaprioritisationpartnershipbetweenpeopleaffectedbypretermbirthandhealthcareprofessionals