Community and public engagement not only allows researchers to give information and receive feedback, it can be embedded in a research project from the beginning, from protocol development to consent documents. Relationship and trust building is a continuous process, a skill that researchers need to improve as it will eventually benefit the community where they reside.
My name is Noni Mumba. My work, here at the KEMRI Wellcome Trust Research Programme involves developing effective and innovative community and public engagement initiatives that will enable community members and the public to be part and parcel of research.
Community and public engagement involves creating platforms, creating avenues that enable researchers on one hand and members of the community on the other hand to come together, and using good communication and facilitation skills, lead them through a dialogue that is mutually beneficial to both parties.
Our community and public engagement strategy has two structures. On one hand, we engage the community purely as a way of giving and receiving information from community members. We give information for example, in terms of what health research is, why it is important, why we are doing it in this particular region. We also give information about why it is important for community members to understand their rights, why they should be involved in research, and the kind of processes and procedures that will be undertaken, and for them to understand that they can join research freely, without coercion, they can leave it at any time they want without any consequences. While we do that, we are receiving feedback, concerns and views from community members in the general engagement.
On the other hand we have work we call study specific engagement. We work with scientists, starting all the way from when a researcher is developing their concept. We look at what the study is about, and begin at that point to think through with a scientist what kind of engagement will be needed for this type of work.
That moves on to proposal development, at the point where the scientist is developing their proposal. We sit in proposal development meetings, or protocol development meetings, and look at the protocol and what engagement strategy the scientist has put together for their study, and advise as to whether that is appropriate. If it is not appropriate, we guide them through which stakeholders they need to engage and what methods to use, such as meetings, workshops, going out to community meetings to talk to community members.
We then move on to look at consent documents: what information has been put in information and consent forms that is important for the research participant to know and understand, what language has been used – is it a language that can a participant can understand? And if the language is technical, then we advise the researcher to tone it down. We then further move on to support the translation of those consent documents from English to Swahili and vernacular languages.
Two key elements for community and public engagement have come up the last 5-10 years. First the issue of trust and relationship building is a continuous process. Any person who intends to implement community engagement activities, especially when they intend to stay in a particular area for a long time, must know that community engagement is a process. Relationship and trust building is ongoing. One minute you have trust from the community members, the next you don’t. Something may have happened in the community that has broken that trust, and you need to put in place measures to make amends with the community, to remedy what has happened.
The other important thing for community engagement is that researchers also need to build capacity for how they communicate with community members – building their skills, understanding the importance of engagement and what that puts into their research, the value engagement brings to their research. That is very important because community members are the people who participate in research. It is important for a researcher to understand the lived experiences of community members or research participants, in order for them to the use the information that they get to help improve their studies.
It is important to invest in community engagement, and engagement itself is important because on the one hand you have community members who are the ones that host researcher activities. For an institution like KEMRI-Wellcome Trust, we are hosted within our community. Within that community we have individuals who will volunteer to participate in studies. Health research develops products and equipment that are going to benefit community members, that are going to be used in health services, for example. They have to be tested on somebody, and somebody has to study the human body. Research participants take time away from their work to come and do research – we are in their homes, in their faces regularly. It is therefore important to fund engagement activities to develop initiatives and approaches that will empower community members to understand what they are getting involved in. We are in a middle-income country where literacy levels are not the best, and often we find that information put into scientific documents, or documents where participants are required to give their consent can be technical. So activities that enable community members to understand the entire process of research are important activities to fund.
On the other hand, engagement is also important because it helps ethical conduct of research, which is already a very important factor for someone considering investing in this type of work. It enables researchers to understand the concerns of community members which helps them as they think through their next research work in terms of how best to ensure that they conduct their research ethically.
This interview was recorded in May 2019