How did we do against our aims?
Overall, we feel that we successfully addressed our aims of:
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Building meaningful relationships with diverse community organisations and health research
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Levelling the playing field between community organisations and researcher anchor institutions
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Administering a community seed fund to explore community led innovation in the sector
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Bringing researchers, community organisations and artists together to collaborate and explore solutions for the lack of diversity of people involved/participating in health research
Format of the Sandpit
The results of our evaluation show that the Sandpit format was accessible, engaging and inclusive for all involved. Getting ‘hands-on’ including through creative activities and, for example, mock ‘patient panel’ exercises really helped to bring to life both the Sandpit environment and the reality of what public involvement can ‘look like’. In line with our published approach [17] creative approaches triggered discussion and debate which led to rich and meaningful dialogue. Having presentations about health and research contexts related to GM and to the community organizations present, also helped to make the context of the Sandpit relevant. Making content relevant to the audience supported more long term thinking about what needs to happen in the sector and how participants could have a role in its transformation.
It was important for us to create a ‘safe space’ at the beginning of the Sandpit. The event was purposefully located (in a netural space in central library), designed and promoted without much information about the format and content, in order to enable everyone to start the same ‘place’. Whilst this approach was welcomed by the majority of the participants, some participants were uncomfortable about not knowing what was expected of them and would have liked much more time to prepare. Overall, however, our evaluation shows that the Sandpit format enabled a safe, respectful and equal exchange of ideas and skills.
To subvert some of the usual power relationships [18, 19, 20] in public involvement in health research, Day 1 of the Sandpit did not include researchers, in order to provide background, context and help create the ‘safe space’. A minority of researchers questioned this approach; however, in the preparation of the Sandpit, when researchers were canvassed about attending an event, many would have been unable to come away from the demands of their research schedule for two full days. This is relevant to a wider discussion about how much time and value research culture accords to public involvement (see also below).
Overall, the ‘pitching’ process was successful. Two community groups decided not to pitch, some participants felt that the funding pots were not enough to scope or pilot a meaningful project and some felt they needed additional time to develop a pitch. Whilst we had co-designed what we thought was a fair voting process, at least four of the community participants felt strongly that researchers and/or members of the Public Programmes Team should not have a vote and that, potentially, different projects would have been funded if only community participants had a vote and this would give an indication of what matters more to communities regarding health research. This is something to bear in mind for future Sandpit design.
We learned to be prepared for unexpected interpretations of the pitch ‘brief’. Although time was allowed in the Sandpit design for participants to think about the pitch brief (in this case – designing a project that would encourage their service users/communities to get involved in health research) a few pitched projects focused more on more traditional health promotion. Whilst this could be considered a ‘failure’ of the process, it enabled further group exploration of the health issues at hand, and their relation to research. Taking the time to engage with these ‘health promotion’ pitches also allowed further trust and dialogue to be established with community partners.
Co-design/Partnership process
We invested time to try and ensure all partners felt that they were equal in the development of the project whilst working with a clear understanding of our roles and responsibilities around delivery. The time needed to develop trust and build relationships with community partners needs to be factored in to the development phase of a co-designed project of this nature [22]. A positive partnership was created between the main partners (the Public Programmes Team and the GMBME Network) which was then extended to the community groups that make up the network and the researchers associated with the Public Programmes Team. This resulted in a much higher than expected response from groups wanting to participate in the sandpit event.
Additional benefits of working with a network as a community partner included being able to use existing communications channels, having access to local intelligence about what health topics were already an issue in different communities and what other initiatives were currently happening in different geographical areas that would prevent (or incentivize) certain groups from engaging with this project.
Conscious, asset-based community engagement
Our starting point was to focus on building relationships with community organisations as experts in reaching their communities, having existing trust and relationships with individuals who attend their centres and groups. Using this asset-based approach was valuable. Rather than seeing community organisations as ‘gatekeepers’ or conduits to reach individuals or service users in their communities, trust was established by valuing the assets of community organisations in their own right. Creative practitioners were similarly valued in the context of the increasing evidence that arts-based approaches can positively address social and health issues [30, 31].
We tried not to use a traditional ‘seed funding’ processes where community organisations are required to invest energy and resources to compete for a small amount of funding (that they might not get). Even when successful, traditional seed funding does not always cover the costs of upfront investment let alone project delivery. Therefore our approach was designed to value their time and expertise. Community participants was valued through payment to their organisations in line with NIHR INVOLVE guidance and in the time spent by the project team before the event and after the event liaising with project partners and funded projects. Participants from smaller grassroots organisations reported that they felt they were better placed to interact with the larger voluntary sector organisations (who were normally better placed to access small pots of funding because they have often have access to additional resources, such as a fundraising officer) as all the pitching and voting was done within the 2 days of the community sandpit.
Addressing inclusion in public involvement in health research
The funded projects all addressed issues of diversity and inclusion in health research. They have reached deeper into communities to engage and involve diverse audience with health research. At least one of the funded projects has also led to a grant application for research, with the community partner as a co-applicant. Several of the other projects have gone on to receive further funding. All have increased the capacity and capabilities of community organisations to take an active role as partners in both health research and public engagement with health research.
Projects that were funded were also on the whole quite ambitious and this required some support to get them on track and feasible within the time and resources. If the Sandpit is repeated, adequate resources need to be built in to support project delivery and evaluation.
Participants valued the time getting to know each other’s ‘worlds’. Researchers appreciated understanding more about community organisations (including community artists), how they work, and who they work with; community organizations felt able to understand more about research and research culture. Of particular interest, the comments made about the language of ‘hard to reach’ revealed conflicting perspectives, but ones which might have become closer through the Sandpit activities:
We are not that hard to reach, but we might find it hard to trust you…
As a researcher, 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.
The sandpit was felt to ‘open researchers’ eyes’ about working with ethnic communities partnering and valuing community organsations. It highlighted the diversity of community organisations to researchers, how grassroots organisations work and the intricacies of their relationships both within communities and with health and research providers. In addition, some of the comments from researchers reveal the prevailing research culture as viewing public involvement as an intervention rather than a relationship. For example, the expressed desire for the Sandpit to focus on engagement with existing research projects focuses on a transactional, instrumental view of public involvement rather than a research culture that values the time taken to establish trust between partners.
The unexpected outcomes of the Sandpit, notably the establishment of the BRAG and the membership of the Manchester BRC and CRF Health Inequalities Steering Group [32], have the potential to strategically influence research culture to ensure more inclusive practices.
From the evaluation of the community sandpit, there was enthusiasm and energy to continue to foster an engaged relationship between community organisations and health research. Eight community connectors expressed an interest and two meetings were held to discuss the purpose, scope and logistics of the group. The Black Asian and Minority Ethnic Research Advisory Group (BRAG) was established in January 2019 in partnership with the Public Programmes Team.
The group is community led with an emphasis on generating solutions and not being hamstrung into traditional formats of involvement. Funded through an award made from the Wellcome Trust to the Public Programmes team, BRAG’s remit is to provide expertise and advice on inclusive practices; to involve diverse audiences in the development, delivery and dissemination of health research. This responds to the strategic priorities of the Public Programmes Team, operating across GM health research infrastructure (including the MBRC and the MCRF) of developing ‘community-led’ priorities, projects and approaches. To date (winter 2020), BRAG have
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Advised on 5 research projects in 2019–2020
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Advised on public engagement and communications projects, including the rebrand of the Public Programmes team (to Vocal) to support greater reach within communities
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Developed Top Tips for Researchers who wish to work with BRAG
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Co-authored blogs, with academics and members of the Public Programmes team [eg. 33]
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Co-presented at national events eg. Equality and Diversity in Science Symposium 2019
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Co-designed and co-delivered (with Public Programmes) training on Inclusive Research for GM-based health researchers.
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Engaged audiences through creative means
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Received leadership training, with a focus on involvement in health research
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Received training on health research processes and structure within GM
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Acted as co-applicants on several funding bids to NIHR and others
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Begun to form strategic research partnerships with GM research infrastructure (eg. Manchester Cancer Research Centre)