Equality, diversity and inclusion

Participant representation

Workstreams 1, 2, and 3: equality, diversity and inclusion in OPTI-PREM was optimised as the OPTI-PREM data set of 29,842 was extracted from neonatal units across England. Within this national cohort we expect a representation of wide geographic, ethnic, socioeconomic, and clinical variation in presentation. This cohort would also have included parents whose first language was not English.

Workstream 4: staff and parent participation as study subjects was as inclusive and as representative as possible. Parents (both mothers and fathers) from a geographic range across England, a wide range of socioeconomic backgrounds and from ethic minority groups, were included in the interviews. Recruiting parents via social media enhanced the diversity in obtaining perspectives from across the country. We included parents who had experienced neonatal care across all gestational ages between 27⁺⁰ and 31⁺⁶ weeks gestation, and across a variety of neonatal units across England. The unit ethnography was undertaken in the East and West Midlands Operational Delivery Network, which has a wide representation of urban-rural, geographic, socioeconomic and ethnic diversity in staff, parents and babies admitted.

Due to the nature of the ethnography, the interviews were conducted and observed in English. We did not have interpreters assigned to the project, although the option of Language Line (telephone interpreting services) was available as part of the routine NHS service. This was an identified gap. Future qualitative studies should explore how best to capture the nuances and perspectives of parents and families in whom English is not the main language.

Workstream 5: stakeholders from a diverse ethnic, geographic and neonatal service background, including maternity, neonatal, management, policy- and decision-making participated in workstream 5. This included parents.

Project representation

The patient and public involvement panel

The parent panel comprised parents from across England, both mothers and fathers, and of a wide ethnic background. It also included a parent who had experienced the death of their very preterm baby. Parents contributed to the development of parent information leaflets, interview of the social scientist employed for the study, and contributed photographs (with permission) for use on posters. We believe that this was done in a manner not to be discouraging to under-represented groups.

A second gap identified, was in the use of social media to recruit parents from across the country for interview, and in stakeholder meetings. We recognise that this produced a bias towards technologically capable parents and excluded those with no ability or resources to access the internet or mobile data to be recruited and be aware of projects such as OPTI-PREM and make themselves available for participation. Further work on how best to be more inclusive to families is necessary.

The research team

The project team was ethnically diverse, had a mix of genders, and members were diverse in their professional expertise. They were geographically spread across England (London, Oxford, Leicester, Wolverhampton, Staffordshire) and included a data analyst and social scientist working internationally and then recruited into English institutions to conduct specific aspects of the OPTI-PREM work. The parent panel lead, and representation from BLISS, were part of the research design, protocol application stages, and maintained participation throughout all stages of the project.

The study steering committee included representation from a wide geographic distribution (Bristol, Birmingham, Bradford, Oxford, Warwick, Wolverhampton, London, Cambridge), of academics with diverse areas of expertise (health economics, academic neonatology, statistical expertise, social science expertise, parent group involvement, and sponsor trust guardianship). The project team supported growth and development of multiple members of the team. For example, career progression and the flexibility to undertake a Master of Science (Data Science, with distinction) for our data analyst, and a PhD (supported by NIHR funding as part of OPTI-PREM) for a paediatric doctor in specialist training.

OPTI-PREM aligns closely with the NIHR-INCLUDE road map56 at the stages of

1. Research priority setting.
2. Research investigator questions, protocol development and funding application.
3. Conduct of the research study.
4. Analysis and interpretation of results.
5. Implications of findings.
6. And will be key participants in dissemination of results once peer reviewed through the NIHR report and published outputs.