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Involving diverse underserved communities

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Community Engagement

What do we mean by community engagement?

Inclusive community engagement means more than ‘involving’ individuals and representatives as members of research steering groups and advisory groups. It is about planning research in the community, and with the community the research seeks to benefit. It seeks to include people with diverse experiences and perspectives who may have unmet needs that and not yet have been represented in research priority setting, decision making or planning. Whilst individual relationships are important, the emphasis is upon building alliances with wider communities. There needs to be commitment from the outset to build collaborative and mutually beneficial research partnerships which extend beyond individual projects. It is about engaging early and investing in agreeing mutually beneficial outcomes to support the project and beyond.

“Community engagement, in this context, goes beyond simply ‘involving’ people. It relies on building ongoing, meaningful relationships between the community and organisations for mutually beneficial outcomes. It is a collaborative process between groups who are brought together as neighbours or through sharing a common interest or concern. It is a powerful vehicle for bringing about environmental and behavioural changes to improve the situation and wellbeing of the community”.

In conversation with community research partners

In early 2021, the NIHR Centre for Engagement and Dissemination invited us to apply for funding to further develop and promote the learning from the Reaching Out Project.  Together with the East of England NIHR Public Involvement Collaborative we recorded a series of informal zoom conversations with some of the community partners across our region who have been involved in various research activities. Community leaders share their experiences of research and discuss the issues that matter to the diverse communities they support. They share the wealth of experience and knowledge they have within the community sector and reflect upon the devastating impacts of COVID-19 and subsequent restrictions which could not have been prepared for. They explain how they have adapted their support and found new and innovative ways to engage with some of the most vulnerable members of our society.

  1. Su Harvey, Director of The Red Shed A charity based in Stevenage providing gardening activities for people living with dementia and their carers and families

How we can help  

One of the most important and challenging aspects of community focussed research is to find the relevant people who your research seeks to benefit. This takes time and involves reaching out and meeting up with people who may have an interest in the topic of the research. This calls for particular in-depth consideration if you are wanting to address health inequalities by engaging people who have been under represented in research. Communities are incredibly complex and it takes imagination and tenacity to seek out diverse groups who may meet physically or virtually in the least obvious places. We can help you find and broker introductions with many different communities with whom we may have established relationships or that we know of through our local, regional and national networks. We can also provide expertise and advice about ways to engage and design collaborative and equitable research partnerships. The earlier you address this the better and we are available to chat with you informally about your ideas and listen to any potential uncertainties. There is no right or wrong way to do this and we are learning ourselves but we do have a lot of experience and we are very happy to share (see NIHR Reaching Out Project for some examples of how ‘messy’ and yet ‘fun’ this way of working can be).

Community Engagement Toolkit

This toolkit is aimed at supporting researchers who are developing grant applications with, and for, diverse communities. It has evolved from what our community partners in the Reaching Out Projects taught us about how they would like researchers to engage with them to build sustainable community relationships. We have transferred their knowledge and experience to the world of health and social care research into ten guiding principles.

www.rdsresources.org.uk/ce-toolkit

Practical Tips

1. Do the groundwork and prepare

  • Be realistic and check that you have capacity and appropriate resources to support the very early design and development phase of your research (pre-grant). You may be eligible to apply for the RDS Public Involvement Fund.
  • This more informal way of working does not fit easily with most university or organisation finance and HR systems. The earlier you can engage the appropriate departments with your plans the better.
  • Ask for advice so that you can anticipate and prepare for potential administration and bureaucratic hurdles e.g. how to pay for catering choices preferred by the community which may be outside of approved university suppliers or purchase of art materials etc.
  • Conduct an initial risk assessment and consider ethical issues to protect yourself and your organisation. With the help of the community leaders (below) you can also evaluate risks and ethics specific to the groups you wish to engage, such as vulnerability, mental capacity, visits to locations which may be isolated or considered ‘unsafe’. This might also include risk to the reputation through bad publicity and provisions for support for yourself and the wider community especially if you are researching sensitive or traumatic topics

2. Find trusted community workers/leaders who can help broker introductions with wider communities

  • People who may be staff or volunteers who have deep connections to the community and who may run groups or grass roots organisations. They can help with introductions to their groups and suggest other connections which may be relevant.
  • Be patient, it can take time to find the most appropriate people and you need to be aware of individuals who might manipulate their role as ‘gate keeper’ to voice their own agenda.
  • Cast your net wide to begin with and think local and grass roots.
  • Find individuals via established community forums such as: Community Voluntary Services, Healthwatch, local authority neighbourhood teams, community health providers and don’t forget informal virtual groups (Facebook, WhatsApp etc).

3. Respect the vast knowledge and experience of community workers/leaders and ask them to help shape the project

  • It is always best to approach people as early as possible to start negotiations and involve them as real partners to help shape the project.
  • Respect that their priority will be the needs and interests of their community, not research and their time is precious. Take time finding out about their agenda and discovering areas of mutual interest.
  • They know their communities well and understand the social/cultural norms and nuances. They can alert you to specific sensitivities around language and topics and access needs.

4. Be honest about the scope and resources and don’t over promise. Agree ways of working and core values.

  • Once you realise the value of working collaboratively with community groups it is easy to get carried away. Be mindful not to over promise as some community groups may have negative experiences of researchers letting them down in the past.
  • When you first meet with the wider community spend time discussing and negotiating the ground rules and parameters of the project. This process can provide opportunity to understand core values and can be kept in mind and reviewed through the project.

5. Be flexible about where and when you arrange meetings

  • Fit yourself around others and be willing to meet in community settings and adapt the timing and format to suit the needs of the people you wish to engage.
  • Be extremely mindful of any accessibility issues and take appropriate steps to overcome these.
  • Always build in time for informal social time and ‘breaking bread’ or sharing delicious food together.

6. Be generous, build in reciprocity and impact beyond your specific project needs

  • Community partners say they feel ‘over researched’ and like ‘nothing ever changes’. So, think of ways to build in positive impact throughout, rather than considering impact as something that happens at the end.
  • Reciprocity can be anything from helping community groups to think about how to evaluate their work and apply for funding; providing a talk about a subject of interest for a community event (not necessarily research!) or volunteering with regular community meetings.
  • Think beyond the remit of your individual project both in terms of the wider needs of the community and inspiring future research. Value the investment in building relationships for the longer term.

7. Invest time, genuine relationships take commitment and time to develop trust

  • There are no short cuts, it takes time to build both one to one relation with the community leaders/brokers and members of their wider groups that they will introduce you to.
  • It helps to have capacity to maintain regular communications and follow up all interactions with feedback and a thank you.
  • It’s OK to disagree and have different priorities and it’s helpful to explore where those differences come from.

8. Be creative and innovative about different ways to work and collaborate

  • It is strongly advised that, in the early stages at least, you do not attempt to deliver formal presentations about your research or the perceived ‘benefits’ of research unless they invite you!
  • Create plans with your community partners and consider ways to share responsibility and resources to enable them to lead initiatives within their own groups in ways that they think will be relevant, accessible, and enjoyable.
  • Be open to very different approaches of engaging and collaborating which may not have clearly defined research-related outcomes other than to simply engage and stimulate conversations.
  • Provide funding for skilled practitioners from different disciplines to help facilitate e.g. artists and outdoor skills leaders
  • Encourage communities to be experimental and innovative and support more informal approaches.

9. Listen attentively and engage fully with the needs and priorities which the community share

  • Absorb the varied lived experiences, needs and priorities and be prepared to shape your research around the needs raised.
  • Collaborate with colleagues across the different parts of the research infrastructure (NIHR) to enable pathways to impact, information, and support according to the needs and interests which emerge.
  • Explore opportunities with communities for them to benefit from the research in their own work and for them to influence research beyond the specific remit of project

10. Be responsive, communicate regularly, feedback any outcomes, and say thank you

  • Finding ways to maintain an interactive a dialogue with communities is time consuming; however, it is essential for sustaining and building relationships.
  • It can take time to find the most effective form of communications and in most cases using different media is needed to ensure everyone has access
  • Showing gratitude and appreciation can never be underestimated and most people like to know what impact they have had.

 

Finally, be authentic by connecting person to person and trust the process by embracing challenges and conflicts that may arise – this is often where the magic happens!

Useful resources – Please find a selection of useful resources below

Toolkit for increasing participation of Black Asian and Minority Ethnic (BAME) Groups in health and social care research

ScienceTech Public Engagement Framework

NIHR Community Engagement Involvement Resource Guide 2019

NIHR CRN INCLUDE Guidance July 2020

NIHR CRN INCLUDE Summary July 2020

Bromley by Bow Centre – Happiness and the House of Dreams

European Citizen Science Association ten principles of citizen science

Comensi Toolkit

NIHR INVOLVE – Being Inclusive in Health Research

Unicef – Minimum Quality Standards for Community Engagement

Unicef – Minimum Quality Report

Empowering meaningful community engagement and involvement in global health research

Community engagement and involvement (CEI) is both a mandate and a core value for NIHR global health research. With that in mind, our latest CEI learning resource, developed in partnership with the Institute of Development Studies, offers a brief set of reflections to help guide decision-making within the context of collaborative research approaches.

 

 

Community Partnership Projects

University of Essex Reaching Out Project  – NIHR funded https://rds-eoe.nihr.ac.uk/public-involvement/nihr-reaching-out-project/

University of Essex COURAGE network – UKRI funded https://www.gazette-news.co.uk/news/18263243.innovative-project-launched-exploring-lives-neurological-conditions/

University of Hertfordshire Stevenage Play Centres Project – UKRI funded  IIRP03 Stevenage playcentres project: Improving health and wellbeing of children | ARC east of England (nihr.ac.uk)