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A two-day workshop brought together community organisations and health researchers. This 'sandpit' event was designed to promote new conversations between health researchers and people from diverse and marginalised groups. It aimed to shift the power balance, and to encourage and fund innovations suggested by community members.

Sandpit events seek to build and level relationships between different groups of people. This workshop was a joint venture between the Greater Manchester Black and Minority Ethnic (GMBME) Network, a public involvement team (Vocal), artists and several researchers. Community members designed and pitched their own ideas for research projects. Everyone at the workshop voted, and the top six projects received funding. The workshop encouraged participants to express their views and, in this way, uncover innovative health solutions.

The need for public involvement in health research is widely accepted. Working collaboratively with communities can help make research relevant and representative of the population. However, people with experience of inequalities are often under-represented.

Previous research has explored barriers to their involvement. This initiative found that a sandpit event could encourage communities to be more involved in setting priorities for research. It outlines a method of involving the public in research, which could be used widely by other teams.

What’s the issue?

Public involvement can help ensure that research meets the needs of the whole population. It is especially necessary in health research. Members of the public can, for instance, be involved in advisory groups, and in designing and interpreting research.

To be effective, public involvement needs to be inclusive and diverse. But currently, younger people and ethnic minority groups are under-represented. A survey in 2018-2019 found that only one in 30 NIHR public contributors were from Asian ethnic groups and one in 50 from Black ethnic groups.

NIHR INVOLVE was the umbrella organisation for public involvement in NHS research. It provided support for patients and members of the public to be involved in research. It also helped researchers to involve members of the public. This work has now been taken over by the NIHR Centre for Engagement and Dissemination (CED).

Previous research has explored reasons for the lack of public involvement from minority ethnic groups in health research. Four types of barrier have been described:

  • research culture (such as the attitudes of researchers, non-inclusive study design, communication barriers)
  • healthcare (structural health inequalities, racism)
  • society and heritage (mistrust of institutions and/or healthcare providers)
  • barriers within communities (lack of understanding of the research process, socioeconomic status, stigma).

There are guides and toolkits available to help researchers work with diverse groups and communities.

This initiative brought together researchers, community organisations, public engagement practitioners and artists. They explored solutions to the lack of diversity among people involved in health research.

What’s new?

A public involvement team, Vocal, teamed up with the Greater Manchester Black and Minority Ethnic Network (GMBME Network) to co-design and deliver the event. The event was therefore designed with real insight about what community organisations value. Co-design was essential to the success of the project.

The sandpit involved more than 30 people, including 15 community members, 5 researchers and 6 creative and engagement practitioners. Community members received a fee, in line with NIHR guidance.

The first day explored public engagement in health research in Greater Manchester. It included a range of activities to generate discussion, reflection and learning. A priority was to create a space where everyone felt comfortable to speak without fear of criticism or discrimination. Activities included role-play in which participants sat on mini-patient advisory panels discussing real-life examples of research.

On the second day, researchers joined the discussions. There were presentations about health conditions and their prevalence in diverse communities.

Community representatives were invited to work in small groups to design and pitch a project that would encourage their communities to get involved in research. Everyone voted and 6 selected projects were awarded funds. Funded projects included research into skin problems affecting members of the African community in Manchester, domestic violence in Black Nigerian women, and menopause in South Asian women (often a taboo subject).

To evaluate the work, the team surveyed sandpit participants and interviewed researchers. They ran a focus group for representatives of the community organisation. The format was well-received and demonstrated an effective way for researchers to work well with community organisations.

Why is this important?

Current methods of engagement and involvement are not effectively encouraging marginalised groups to participate. This sandpit event brought together diverse groups in a neutral space. Everyone was helped to feel comfortable and that their view mattered as much as anyone else’s.

Participants found the event interesting, generally felt that it was inclusive and that their voices were heard. All participants found the sandpit a good way of getting people to work together. They said it addressed power dynamics between researchers and communities. By the end of the second day, participants had greater understanding of the need for public involvement in research. One participant said: “It was fun and relaxed but with a really focused and important message”.

Researchers also found the event valuable. They said it challenged some of their original ideas about community engagement. One researcher said: “We talk about collaboration and partnership working but it doesn’t actually happen. This event put community organisations on an equal footing and values their time and input”. Another said: “As a researcher, [it] really opened my eyes to the fact that engaging communities wasn’t that hard. We are told almost from the start as students that they are hard to reach.” One participant said, “We are not that hard to reach, but we might find it hard to trust you …”.

This event was carefully prepared. The study emphasises that public involvement is a relationship not an intervention. Relationships between researchers and community groups take time and work from all parties. They need mutual agreement on what they are aiming to achieve.

What’s next?

Since the community event:

  • an advisory group (BRAG, Black, Asian and Minority Ethnic Research Advisory Group) was established to advise researchers in Greater Manchester on more inclusive practices
  • 3 community organisations are now directly involved with health research projects
  • several community participants have joined a strategic group to provide community knowledge.

In addition, many participants said they felt more confident in engaging with health research.

As a result of feedback in the surveys, the public involvement team said they would adapt any future community sandpits. They would:

  • give more time for pitch development on the first day
  • be clear about the amount of funding available
  • redesign the voting process to ensure that the chosen projects more clearly reflect the priorities of the community (rather than the researchers')
  • be more clear that only projects focusing on health research would be funded.

The researchers would like to run another community sandpit in early-stage (preclinical) research. Public involvement in this type of research is lacking.

The team stressed that sandpit events should not require funding from community organisations that they might not get back. Events should also limit the amount of time these organisations need to put in.

You may be interested to read

The paper this NIHR Alert is based on: Islam S, and others. “We are not hard to reach, but we may find it hard to trust” …. Involving and engaging ‘seldom listened to’ community voices in clinical translational health research: a social innovation approach. Research Involvement and Engagement 2021;7:46

A trial of the INCLUDE Ethnicity Framework: Treweek S, and others. Developing the INCLUDE Ethnicity Framework—a tool to help trialists design trials that better reflect the communities they serve. Trials 2021;22:337

A commentary on COVID-19 research and ethnicity: Treweek S, and others. COVID-19 and ethnicity: who will research results apply to? The Lancet 2020;395:10242

Being inclusive in public involvement in health and care research: guidance from the NIHR for researchers and practitioners.

A practical guide to being inclusive in public involvement in health research: a guide to accompany the Being Inclusive in Public Involvement in Research paper.

An earlier paper exploring power and relationships in public involvement in health research: Locock L, and others. The power of symbolic capital in patient and public involvement in health research. Health Expectations 2017;20:5

 

Photo: Jill Jennings.

Funding: This paper is funded by NIHR Manchester Biomedical Research Centre and the NIHR Manchester Clinical Research Facility.

Conflicts of Interest: The study authors declare no conflicts of interest.

Disclaimer: NIHR Alerts are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that views expressed in NIHR Alerts are those of the author(s) and reviewer(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.


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Commentaries

Study author

We knew the way we were trying to involve and engage with diverse groups wasn’t working so we approached the communities we wanted to reach directly. This action research was entirely co-produced between Safina Islam, leading from the Vocal team and the GMBME. Safina’s experience in community development was key to the success of the initiative.It took a lot of work and expertise to make the sandpit happen and it was designed very carefully. We consider it, and its legacy, a huge success."It is so important to work together with the communities with whom you want to engage. They are the experts. Public involvement takes a lot of time and effort – it’s a relationship.Bella Starling, Director, Vocal 

NIHR CED

The project's emphasis on investing time in relationships, and levelling the playing field and power dynamics, was great. It was apparent in the way the event was designed, facilitated and followed-up. Funding was available so that people could attend (valuing them), and could get something meaningful from the time they invested. The researchers were prepared to put themselves out to be community led, even when some elements of the design weren't universally liked – for instance, that there were no researchers present on the first day.This paper chimes with the NIHR’s goal to make research much more community-led and embedded. We need to find  ways of structuring the dynamics in favour of communities rather than the research system, and learning how research benefits. This kind of approach can be learned from and scaled up.At CED, I'm encouraging parts of NIHR (for example, the Programme Grants for Applied Research, or PGfAR) to take a more community-led approach. We want programmes, NIHR Centres and infrastructure to think differently about their existing structures; it’s not just a matter of making patient and public involvement (PPI) fit, we can rethink the way we do things entirely to be less 'hard to reach' as research funder. PGfAR is going to try a community engagement grant fund which will open up to communities taking more of a lead in developing research and championing innovation in how we all work together to maximise research benefit and impact for those who need it most. Zoe Gray, Associate Director of Involvement, Participation and Engagement, NIHR Centre for Engagement and Dissemination (CED) 

Researcher

This paper presents a novel and practical approach to public involvement in research that could be easily adapted. It responds to the challenge of how to make public involvement more inclusive. The community sandpit is an effective approach to involve diverse communities. Co-production with ethnic minority communities is important, particularly in the current context of addressing COVID-19 disparities.The main impact is likely to be on researchers and funders, in terms of setting out a practical approach that could be easily replicated. This seems a robust and well documented process. The authors have presented this as a social innovation and it has not been evaluated in different situations. The authors’ list of barriers to involvement are highly relevant to me and I may use them in my work.Jane South, Professor of Healthy Communities, Leeds Beckett University 

Lived experience

This work could be adopted by the NHS in formal consultation processes making their services more accessible.Community models may differ regionally and vary according to community trust and the commitment of other organisations. As such, it’s important to monitor the success of this approach with further research.As a CEO of a BAME organisation, Shama Women's Centre, it highlights the potential of a successful engagement - co production model. As a carer, it gives a degree of confidence that there are channels to present the voice of the BAME community.Khudeja Amer-Sharif, Public Contributor, Leicester 

Researcher 

I am passionate about PPI and feel this work could have significant impact on the way that researchers engage community and grassroots organisations. It is vital that we make more effort to build working relationships with small organisations. These organisations are the experts on their own communities and their needs, and better placed to link with other organisations and participants traditionally out of our reach.We need to start valuing communities more, and seeing them as partners. It is a mutually beneficial relationship – they are a fantastic source of knowledge, insight and networks, and without them we struggle! They deserve credit, real opportunity to input, and remuneration where it is due.I feel that researchers need more guidance on how to involve community organisations in research. It tends to be an afterthought. The reality is that more researchers need to be made aware of the value of including communities from application to dissemination.Bliss Gibbons, Researcher, Coventry and Warwickshire Partnership NHS Trust, Coventry  
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