Planning your community engagement

The next step in your planning process is to decide who you want to engage with, both with regards to:

(i) The community you want to engage; 

(ii) Other stakeholders that you may need to work with within your engagement process. 

Which community should we be engaging in?

The following questions will help you to think through who you want to focus on engaging with. 

• Which communities do we want to engage with? Why? 

• How will engaging this community help us reach our purpose for this engagement? 

• Who is under-served in our population (in health and care research generally, or in relation to the research/topic we are focusing on)?

• Are we focusing on a community of place, interest, or identity? (See 'What is community engagement?' section for more on this)

Where can we get information about our communities and who is under-served by health and care research? 

The characteristics of research participants have not been systematically collected in health and care research. As a result, the existing data we have on who is under-represented in health research does not provide the full picture. There are a range of places, however, where we can find out about our local populations, and who is likely to be under-served by health and care research. One of the best places to start is to speak to your colleagues working in public health e.g. at the relevant Local Authority, or in the NHS. Groups and communities that are most impacted by health inequalities are likely to also be under-served in health and care research. 

There are a number of demographic data sources you can also look at: 

• Office for National Statistics - provides a range of data sets including data from the 2021 national census, a health index, and an interactive tool to find out more about your local authority by different indicators, such as healthy life expectancy and weekly pay. 

• Finger Tips (Public Health England) - A large public health data collection organised into themed profiles. Includes data at GP practice and Local Authority level. 

• Your Local Authority's website and public health/inequalities data

The above data sources should provide data on the health needs and inequalities of the populations you work with and serve in your research. There are additional sources you can look at for further information:

• Local Authority public health strategies and data

• Local NHS strategies and documents 

• Local Healthwatch reports

• Local voluntary and charity sector reports 

• The Consumer Data Research Centre's Index of Multiple Deprivation 

Who else do we need to speak to or work with?

Once you have decided which community you want to engage, there are a few more questions to work through as a team before deciding how to proceed: 

• Who is already engaging with this group or community? 

• Is anything similar already happening or has it been done before?

• What skills, knowledge and resources do we have that we need to engage this community well and in a meaningful way? 

• What skills, knowledge and resources do others have that we need to engage this community well and in a meaningful way?

• Are we the right people to lead this engagement? If so, who do we need to work with?

By answering these questions, you may find that engagement work is going on already within this community, that is being led by other institutions (for example, through a Local Authority health and wellbeing initiative). Rather than setting up a new, separate engagement process, you may agree with the Local Authority to engage with the community through their existing programme and networks to avoid duplication of work and potential burden of over-engagement for members of the community. 

Avoiding duplication and engagement fatigue 

There are numerous examples and stories of people from the same organisation going out to the same community to engage with them separately about research at the same time. This confuses and frustrates communities and risks damaging the relationships we are trying to build with them, and their trust in the health research system. 

To avoid this, we first need to understand what our own organisation is already doing. We also need to let our colleagues know who we are hoping to engage so that we can make an informed decision as to whether more colleagues need to be involved, or if somebody else is best placed to take a lead in the engagement process (for example, a PPIE colleague). You may surprised to learn about pieces of engagement work going on that you weren't aware of before, so it is always good to speak to teams from across the organisation. 

We also need to understand what our partner organisations or other actors in the wider research and health and social care space are doing, or have done previously to engage this community. We therefore need to speak to organisations in the NIHR, NHS, Local Authority, and elsewhere before we make a decision about engaging. For the NIHR, this means all relevant parts of the NIHR infrastructure, such as our Local Clinical Research Network, Applied Research Collaboration, and Biomedical Research Centre. Communities are unlikely to know or care about the differences between the internal structures within NIHR, and we do not want to confuse or frustrate them by approaching them from two separate centres (or even from within the same centre, which has been known to happen!). 

It is also important to speak to local services and Voluntary and Charity Sector (VCS) organisations, who do a lot of work in local communities. 

Once we have built this picture, we can then answer the questions listed above. If we decide that engaging this community is the right thing to do, that we have the skills and knowledge we need to engage the community and that we are the right people to lead this engagement, we can then start to think about the how. Going through this process of speaking to other organisations can also help to build partnerships with others and to bring in others to your engagement process who may have different skills and networks. 

Below is a list of the stakeholders you should try and speak to or understand what work they are doing with this community. 

1. Your own team and colleagues from across your organisation 

2. Local NIHR infrastructure: 

• Local Clinical Research Network (LCRN)

• Biomedical Research Centre (BRC)

• Applied Research Collaboration (ARC)

• Clinical Research Facility (CRF)

• Local Bioresource Centre (hosted by Biomedical Research Centres)

3. Local health and care infrastructure:

• NHS Trust

• Primary Care Network 

• Integrated Care Board/System (ICB/ICS)

• Local Authority

• Local Healthwatch 

4. Local organisations and services:

• Local libraries

• Voluntary and Charity Sector organisations (VCS)

• Local Voluntary and Charity Sector (VCS) umbrella organisation 

• Local museums 

An important step in your engagement planning process is to be clear on what level of decision making power you are able to share or give to your community. Co-production is a process that involves shared decision making at every stage of the engagement process, right from the development of the project idea. Co-production has gained a lot of traction in recent years as an ideal approach for public services and organisations to take in the designing of services and programmes of work. This has sometimes led to lower levels of engagement, such as consultation, sometimes being mislabelled as co-production. If we do this, we are at risk of disenfranchising our communities by raising expectations about how much power they can expect to have in their relationship with us. 

If we only have the resources to consult our community, rather than to co-produce a project together, it is better to be open and honest about what we are able to do, than to say we are doing something with a deeper level of decision-making power than we are able to offer. 

Having a basic understanding of some of these concepts, such as co-production and co-design, is therefore important, so that we can use them correctly when we communicate with our communities, and also to manage expectations of colleagues when designing a project or funders when applying for resources. The definitions provided are broad. This is because each term describes a process based on key principles that are applied according to the local context of each engagement, rather than a fixed process with a set of pre-determined activities. 

Co-production

 A way of working that involves renegotiated, equal relationships between research organisations and the people impacted by the research. This way of working takes into account power relationships and involves working together with people from the outset of the process. 

It centres around co-commissioning, co-design, co-delivery and co-evaluation together with those affected by or with lived experience of the research topic. It harnesses the skills, knowledge, strengths and experience of those involved, benefiting individuals, groups, organisations and the wider community. It is principles-driven, rather than a fixed process with specific tools and techniques involved. 

Co-design 

Communities and people with lived experience of, or who are affected by an issue, are involved as equal collaborators in the design of a process, project, service or product. Doing so makes sure the research or project, and the proposed process for delivery, meets the needs of the people affected/with lived experience. 

Community engagement 

Researchers/research organisations work with and listen to communities in a reciprocal process focused on building long-term trust. The process helps health and social care research better reflect and respond to these communities, their needs, interests and priorities. This process may involve elements of co-production and co-design as these relationships develop and trust is built.