Case study: developing a community health research ambassador initiative to build community leadership in health research with under-served communities

How can we enable people from under-served communities to influence research agendas and decision-making? The NIHR Applied Research Collaboration West and People in Health have been developing a community Health Research Ambassador initiative as a way to build community leadership.

What’s the issue?

Certain communities are ‘under-served’ by healthcare research and services and whilst there is no singular definition regarding which communities can be defined as under-served, these communities tend to share certain features. They have lower inclusion in research, often experience the highest health inequalities which are not currently matched by the volume of research addressing these issues, and have significant differences from other communities in how the community engage with and respond to health interventions. Subsequently, it is uncertain to what degree the outcomes produced by health research are applicable to those who are most affected.

It is important to understand and develop new ways of working that can first, enable people from under-served communities to influence research agendas and decision-making, and second, influence the implementation of research findings and healthcare services so that they are accessible and culturally relevant.

What did you do?

The Health Research Ambassador initiative has built on the Black and Green Ambassador scheme set up by Ujima Radio and Bristol Green Capital Partnership, adapting it to a health research context. Three alumni Black and Green Ambassadors were recruited to this pilot project. The ambassadors devised a focus for this work: mental health and wellbeing and opted to run a series of workshops with women who are refugees or seeking asylum in the Bristol area to explore their priorities.

Five workshops were developed and facilitated by the ambassadors in collaboration with the research team. Each workshop built on the previous, led by the priorities and interests identified by the women who wanted to learn more about mental health and ways to manage stress. A range of creative activities were drawn upon such as foraging and cooking to develop trust and rapport in the group and elicit discussion, as well as practical and informative activities about mental health such as tai chi, music and a specialist session led by a health psychologist, and training in understanding health research. In this way we were able to develop a reciprocal relationship with the women, ensuring that each workshop ‘gave something back’, while also increasing awareness of the importance of research.

The project was evaluated in several ways: evaluation of the workshops from the women’s perspectives, logic models and an independent evaluation of the ambassador’s experiences. 

What happened?

A key benefit has been the development of the concept and role of Health Research Ambassadors and gaining an understanding of the challenges and requirements to run this initiative in practice. 

The ambassadors have benefitted from the training and experience from being involved in this work. In the feedback about the training provided to them, they reported learning new skills e.g. theory of logic models. Moreover, the role provides valuable experience in working with health research institutions and some opportunities to influence discussions and decision making, for example, some of the ambassadors took part in an NIHR roundtable discussion about research implementation and one ambassador has joined a public involvement steering committee at the Health Protection Research Unit (HPRU) in Behavioural Science and Evaluation.

Beneficial outputs from the workshops with community members include: establishing good and sustainable relationships between the project team and the women, and between the community members themselves. The women were enthusiastic about the focus on mental health and wellbeing which was relevant to them because of their experiences. The women identified their priorities, specifically learning more about wellbeing to support themselves and members of their community, and benefited directly through sharing and learning from each other as well as the activities and informative sessions.

What could other people take from this?

Key learnings

This pilot project has enabled us to develop the concept and role description of Health Research Ambassador through our practical experiences of doing this work – working together as a team to run the workshops with community members, and the discussions that we have had with colleagues and other interested parties more widely. Through doing this work we have a better understanding about the boundaries of the role, but we envisage that this is something that will further develop as the work moves forward. We have also begun to explore and further understand what responsibilities are required of an individual who is supporting and managing the ambassadors through the creation of the co-ordinator role for the project.     

Training needs of the ambassadors were mapped and a package was identified and delivered to the ambassadors. The team’s experiences of managing and delivering the training and the feedback from ambassadors about it has provided us the opportunity to learn about how the training content and delivery could be improved for future ambassadors. We anticipate that individuals will have different training needs and are aware that as alumni black and green ambassadors, Asia, Roy and Oliva came to this project relatively well equipped for the role in terms their connections with communities, and their ability to manage time and plan and facilitate workshops. 

In the process of planning and delivering the workshops, the team have learned valuable lessons in creating a trusted space for community members to come together and share experiences and perspectives with each other and the team. We have found that ensuring that there is informal time in the workshops for the community members, ambassadors and the research team to chat (for example at the beginning and during lunch) has been important. It has also been necessary to be flexible and adaptable throughout this project. For example, training sessions and workshops have been cancelled due to the weather and conflicting responsibilities. This has not affected the success of the project because the funding period was extended; however, projects that are only funded for short periods could run into challenges when trying to establish sustainable and meaningful ways of working with communities. The learnings from this project could be important for funders to realise when allocating timelines and deadlines for future community projects. 

The research team has also recognised the importance of ensuring there are strategies in place from the very start to capture the reflections and learnings that arise from projects. This has included the evaluations of the workshops completed by the women, regular team meetings which have served as a useful space for discussion and feedback, feedback forms collecting information about the ambassadors’ experiences of the training packages, and the external evaluation of the ambassador’s experiences and learnings that have come from being involved throughout this project.

Our work has highlighted the importance of giving back to community participants in order to create genuinely reciprocal relations. It is important not to make assumptions about what this might look like. For example, we floated the idea of a community-led project, but the session led by a health psychologist arose from suggestions made by the group and provided a much more immediate and practical response to some of the issues raised by the women. 

We are actively disseminating this work and engaging with colleagues across different organisations affiliated with the NIHR Applied Research Collaboration West and wider NIHR and other research organisations, and hope that these learnings will be useful for future organisations hoping to develop a similar programme.

Recommendations

Some recommendations that we can make after our practical experiences of conducting this pilot Health Research Ambassador project include:

1. Understanding: It is important to identify and understand the individual needs of the ambassadors in terms of their training and support to undertake their role and their capacity to undertake additional opportunities.
2. Communication: Regular communication – updates and check-in meetings (via emails, online or in-person) between the ambassadors and research team is important. Creating space in the workshops with the community members of communicate both informally with each other, the ambassadors and research team, and with focus in workshop activities and evaluations, so that they are able to build trust and meaningfully engage with the development of workshops and priorities.   
3. Facilitation: We have found that an ambassador coordinator role is helpful because this person can support and facilitate the ambassadors in their work and ensure that their training needs are met. This person provides a single point of contact between the research team and the ambassadors, facilitating communication amongst the project team through organising team meetings, emails, etc. This person can also liaise with researchers and external organisations to help connect, promote and disseminate the work.
4. Flexibility: The research team members have found that it has been essential to work flexibly to accommodate the needs of the ambassadors regarding scheduling meetings etc. The whole team has also remained flexible and open to the needs of the community members when planning the workshops. For example, the day and time of the workshops was led by the women’s availability, we adjusted the payment Standard Operating Procedure to ensure that we could pay the women in cash for their time and expenses.
5. Respect and sensitivity: It has been vital to listen and be sensitive to the community of women who have worked with us attending the workshops to ensure that there is space for their voices to be heard and that the team meaningfully respond to their experiences, perspectives and the priorities they identify. The importance of the ambassadors in creating this environment and developing the connection to the community members involved in this project has been crucial.
6. Relevance: Workshops were carefully planned so that they were relevant for the women and aims of the ambassadors. The venues for each workshop were chosen with the aim that they would be relevant to the women in terms of being accessible, welcoming and unintimidating. The spaces were also relevant to the interests of the ambassadors where possible, for example in the earlier workshops, it was possible to meet at the city farm providing an outdoor garden space to promote wellbeing, through nature. As the project evolved, the content of the workshops was developed to be relevant to the focus set by the ambassadors and the priorities identified by the women. 
7. Creativity and fun: Central to the success of the workshops was making them a space for everyone to come together to do creative activities which were fun, whilst also drawing out more serious discussions in relation to our focus: mental health and wellbeing in migrant communities, and identifying the women’s priorities in relation to this.   
8. Reciprocity: It is important to work with communities to identify ways of giving back to participants which are relevant, timely and meaningful, and to ensure that public contributors are paid for their time and travel expenses.   

Are there any resources/outputs?

An Interim and Final Report of this work have been written including both internal and independent evaluations (these are not currently published online).

The project has a webpage: Health Research Ambassadors – ARC West

A news report: Building community leadership in health research with under-served communities – ARC West

A blog written by one of the ambassadors: Reflections of a Health Research Ambassador – building community leadership – ARC West

What’s next?

Due to the successes and interest in this pilot work, some funding has been awarded to continue the Health Research Ambassador work as part of a wider funding grant provided through the Integrated Care System’s Research Engagement Network Development (REND) funding scheme. Partners involved in this work include the NHS Bristol, North Somerset and South Gloucestershire (BNSSG) Integrated Care Board (ICB), Bristol Health Partners Academic Health Science Centre (on behalf of NIHR infrastructure in BNSSG – ARC West, West of England LCRN, BRC, Bristol Trials Centre, CRF, HPRU, three NIHR Schools), and community health organisations situated in the BNSSG area: CAAFI Health and Nillaari. 

The plan is to build on and develop the concept and role of Health Research Ambassadors in collaboration with the community partners and public contributors engaged in the REND work, with an aim to recruit a new generation of ambassadors from minoritised ethnic communities in the Bristol area, and the current ambassadors have agreed in principle to peer-mentor this next generation of ambassadors.