The training, held online in April 2021, was for researchers and community members working with ARC South London’s maternity and perinatal mental health theme to explore the barriers, issues and solutions that can help researchers to involve diverse communities in research. This is vital to the theme’s research, which focuses particularly on addressing poorer outcomes for women and babies living in areas of social disadvantage and those from Black, Asian and minority ethnic groups (Fernandez Turienzo, et al, 2021).

Maternity project team

The event was attended by 29 people – 14 community members with experience of using maternity or perinatal mental health services and 15 researchers/policymakers (the community members were Black (9), White European (2) White British (2) and Mixed ethnicity (1).

The aim of the event was to generate learning to provide practical advice to help researchers, academics, practitioners and the public, including different community groups, to facilitate mutual understanding and strengthen links between researchers and local communities.

Our focus was on ‘involvement’ in research, and here we were working with the NIHR’s definition in which research is ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them’. Some of the learning from the event is also relevant to ensuring greater diversity and equity in research participation (ie who is studied and how they are involved), and to research engagement activities (ie how we share knowledge and engage with the public about research findings).

We developed the event using ‘Participatory appraisal methodology’, and co-production described as ‘an approach in which researchers, practitioners and the public work together, sharing power and responsibility from the start to the end of the project, including the generation of knowledge’ (Hickey et al, 2018, p4).

Good practice guidance and the importance of reciprocal relationships

NIHR Standards for public involvement emphasise the importance of respect, support, transparency, responsiveness, fairness and accountability. Good practice guidance for improving inclusion of underserved groups in clinical research encourages researchers to explore barriers to participation. And Mathie and colleagues have highlighted the importance of reciprocal relationships between researchers and the public.

Reciprocity – behaviour in which two people or groups of people give each other help and advantages. Cambridge University

Reciprocity is the exchange of something between people or groups of people when each person or group gives or allows something to the other. Collins Dictionary

Joint community and researcher training

The training involved facilitated work in four small groups containing researchers and service users. First, we identified barriers to involving diverse communities in maternity research and recorded these on a digital whiteboard. These were exchanged and then another group responded to the identified barriers, with a list of Dos, Don’ts, and further questions or reflections.

Barriers to community involvement in research

Service users and researchers identified many barriers to community involvement in research. These included barriers to participation in studies and/or to ‘involvement’ in the design of research. Participants also highlighted a power imbalance between researchers and communities, and a lack of evidence of diversity among the research team and the research institution’s culture. 

Community members said that people do not always trust researchers who approach them in a research setting. This, coupled with technical language and information sheets and long consent forms, put people off being involved in research. Specifically, formal language that might work for gaining ethical approval and seem ‘respectful’, was sometimes seen as impersonal, distant, or cold. Pregnant women, and those juggling childcare and other responsibilities and worries, need to feel that the demands of their lived experience is truly appreciated. These points underscore the importance of involving communities so that research design and all communications can be tailored in ways that are sensitive and responsive.

Not feeling valued, ‘feeling the benefits will be only one way’, insufficient funding for PPI, and slow payment, or complicated systems for claiming,  out-of-pocket expenses were also seen as barriers. And certain groups could feel ‘research fatigue’, having been asked many questions by different professionals without always knowing the purpose or seeing a positive change or outcome as a result.

The following tables summarise the group’s responses to addressing the need for reciprocity, valuing PPI and financial barriers to involvement.


Involvement in research


  1. Think about PPIE in research from the outset together with equity, diversity and inclusion and include full costs in the funding application. Take time to identify all the activities and time points when community and service user involvement is needed, and work out the necessary budget using NIHR and ARC guidance. A Public Involvement Coordinator or lead is one of many legitimate expenses.  
  2. Involve service users from the outset (when planning a study) and discuss what budget is needed to cover participation costs (payments, in cash or vouchers, for their time (e.g. for contributing to the funding application process, attending meetings, contributing to the analysis and writing up, writing a summary of the research for patients and the public), travel expenses, room-hire, catering for meetings, childcare costs, but also potentially for training, possibly use of a laptop or phone/digital access expenses, conference fees and accommodation, mentoring and support.)
  3. Build in contingency (time and budget) for new, or unforeseen, contextual requirements: for consultation, for working with volunteers and people with multiple commitments (young children, caring responsibilities, shift work, health issues, conflicting demands, conflicting organisational pressures, etc)
  4. Find out what does (and might) motivate people to get involved in research. Ask, ‘How can involvement in research give individuals and communities opportunities they want?’ For example, consider professional emotional support, peer support, mentoring, access to university libraries, conferences and training.
  5. Think creatively about ways of rewarding individuals and organisations this might be supporting community members to undertake their own research, to do some training, have a researcher speak at their meetings, to get writing opportunities, the opportunity to make regular social media posts for the team, etc
  6. Provide different options for rewarding involvement, and personalise where possible. Some people may prefer opportunities in kind, others may prefer cash. People on benefits may need support (such as a letter to Jobcentre Plus explaining that a PPI payment is spread over several weeks and does not exclude availability for work)
  7. Ensure published research papers are open-access by covering the cost in the budget
  8. Actively facilitate close, working relationships. Think about: building trust; having a named PPIE coordinator or intermediary role; responsiveness; reaching out; providing support; induction/training needs; listening; creating opportunities; transparency (about the budget, research process, progress, etc), regular updates and communication


  1. Don’t underestimate the costs of PPI in research
  2. Don’t ignore the need to reward or incentivise community engagement in research; involvement in research design and communication; or participation in research
  3. Don't let claiming payments for PPI advice or participation in research be difficult
  4. Don't forget to cover all legitimate costs and claims: payment for time, for travel, for childcare and where needed carer/personal assistant costs
  5. Don't limit research budget contributions to monetary payments or vouchers. Offer: training and support; ask what motivates people to participate


Questions and reflections

Participants felt that more attention should be given to the following points.

  1. How can the research community build PPI capacity and establish learning about good practice in involving people?
  2. Can we get NIHR to recognise the need for PPI intermediaries to work between, and alongside, researchers and communities?
  3. How can we influence the research community to consider PPIE capacity-building and the sustainability of PPIE funding?
  4. How can we feedback and influence ethics committees and R&D departments to allow the use of user-friendly formats for study information sheets?
  5. Can we influence development of guidance on user-friendly language for recruitment to research studies via social media?


Summary and reflections

Researchers and service users agreed that removing barriers to community involvement in research was complex and required a multi-faceted approach, involving whole-organisation academic systems and structures as well as individual interaction between researchers and individual service users. Creating a genuine sense of cultural safety, equality and respect would involve diversity among the research team, for example.

While adequate funding for community involvement is important, participants wanted to move away from a transactional model to a more holistic, relationship-based way of working. Funding is ‘necessary but not sufficient’. In keeping with the principles of co-production, researchers and community members should discuss what community members might need, value or benefit from, and design this into the project from the start. Above all, participants felt it was essential to plan for PPI from the beginning of a study and to involve services users at the earliest opportunity.


The learning on which this blog is based was co-produced by members of the Maternity and Perinatal Mental Health Patient Public Involvement & Engagement (PPIE) group. The following members inspired, organised and facilitated the training event: Agnes Agyepong, recent service user and maternal health advocate; Emily Ahmed, recent service user and Public Engagement Consultant; Vita Moltedo, recent service user, PA Peer Researcher and Maternity Voices Matters; Katherine Umutoni, PA Peer Researcher and Maternity Voices Matter; Mary Newburn, PPIE Lead ARC Maternity & Perinatal Mental Health Theme; Abigail Easter, Senior Lecturer in Maternal and Newborn Health, Deputy Theme Lead, NIHR ARC South London Maternity and Perinatal Mental Health Theme; Sergio A. Silverio, Research Associate in Social Science of Women’s Health, King’s College London; Jane Sandall, Professor of Social Science & Women’s Health, King’s College London, Theme Lead, NIHR ARC South London.

This work was funded through the Public Engagement Small Grants Scheme. The Public Engagement Small Grant Scheme is funded by King's College London and The Wellcome Trust.


Fernandez Turienzo, C, Newburn, M, Agyepong, Buabeng R, Bedward L, Dignam A, et al. A. et al. Addressing inequities in maternal health among women living in communities of social disadvantage and ethnic diversity. BMC Public Health 21, 176 (2021).

Hickey, G., Brearley, S., Coldham, T., et al (2018) Guidance on co-producing a research project.  INVOLVE.