The benefits of community engagement in medical research

Presenting a community engagement plan containing various activities for specific studies  is   not as easy as one would expect, especially when it comes to a point of presenting  expenses attached to the activities. Most Principal Investigators are always keen not to argue with you when shedding more light about planned activities so that communities are more aware about their study; they are always interested to hear more about the expenditures that are going to be made and how  that will  contribute to the outcome of their study. Well requesting more information about the expenditure is not a problem but then the time frame that it takes to approve the budget for the activities is where my interest lies.

From my experience I have observed that most Principal Investigators care about results that  are brought on the table  not what  communities are entitled to know about the their study or what  they will say about it. Most researchers do not take community engagement as something worth investing their resources. Wellcome Trust  which is one of the funding organization  encourages  researchers to engage  communities where eligible participants come from, this is also supported by a  global movement to promote community/ public engagement  in  research.

A researcher attending one of the community engagement meetings

 Community engagement helps to shape various relationships; thus between researchers and local communities, study participants and study team working in the area, community leaders and  researchers not forgetting  a relationship that exist between researchers and other stakeholders operating in the same catchment area .  Imagine a researcher goes in a community to conduct study procedures without even having an interaction with the local leaders, other stakeholders and the entire community, what would be the reaction of the communities towards such a practice? Every community has its own norms and values which researchers need to observe and adopt some of them.  Therefore through community engagement such relationships are strengthened.

Apart from this community engagement practice also ensures that there is mutual understanding between these different groups especially eligible participants.    Conducting research in developing countries like Malawi   is good when there is mutual understanding which leads to trust. Communities need to know at least most information about the studies that are conducted in their area; they need to be represented through representatives. Researchers should aim at ensuring that such a relationship is established at all cost.  Previously before community engagement was promoted in Malawi most communities were denied an opportunity to understand medical research and why their participation matter a lot, as such there were a lot of misconceptions associated with research; some said researchers draw blood and sell it for their own benefits, other attributed other deaths to research procedures,   in worst case scenarios field teams were not welcomed in other villages because they were considered Satanists. All this was because there was no any mutual understanding.

On the other hand community engagement helps to move towards the autonomy of a community. In developing countries   most people are not oriented on their rights such that they have  few words to say whenever approached  to participate in a study, some  of them don’t know how to differentiate general  treatment from a study procedure as such they accept  to participate out of ignorance. Community engagement practice help to empower communities to have a say in research studies, the same with eligible participants.

Apart from this through community engagement we can share with the communities the relevance of studies into their lives.  In most cases studies that are conducted are planned by researchers and then they are just implemented in a targeted area without sourcing the views of the local communities. Engaging communities at the beginning of the study (thus during protocol development and at the beginning of studies helps to incorporate their views   despite that they ideas may not be as   professional as researchers would expect. In summary Community Engagement helps to ensure that there is mutual understanding between researchers and communities where research is conducted hence the need to have the process included in the  implementation plan of a protocol.