Research in our communities
Research has a purpose. While it observes trends and the impact of different factors on different communities, research aims to create solutions for real-life problems. Right now, there are medical researchers studying and trialing vaccines for COVID-19, with the hopes of being able to save lives. However, these studies are also facing a challenge: recruiting diverse participants.
It’s important to produce results that are truly representative of the communities we are a part of. In research, data results from participants. Since participants vary from study to study, the findings reflect the characteristics of the specific community studied and may not always generalize to other communities. For instance, if we look at a study where most of the participants were families in Washington, D.C., its results won’t tell us about families in Portland, Oregon, or Boston, Massachusetts. Even if the study is strong and produces great results, you can’t overlook the impact of population and diversity in a sample size.
Historically, research has also been impacted by these questions:
Who has access to research?
Who has the ability to participate?
Who benefits from this research?
For some communities, studies such as the Tuskegee Syphilis Study and the Guatemala Syphilis Study, have left a lasting impact on the perceptions of research. The Tuskegee Syphilis Study studied whether penicillin could be used as a preventative treatment for syphilis. However, to obtain their sample, they recruited Black men, without informed consent and with false promises of better medical care. Similarly, in the Guatemala Syphilis Study, Guatemalan participants were deliberately infected with syphilis, without their consent and without compensation.
Research has come a long way from this and ethical guidelines have been created and enforced to ensure the safety of research participants. However, the lasting impacts of these studies can still be seen today in how communities are represented in research, and how they have access to research.
Beyond mistrust, there are additional barriers to participating in research. It could result from language differences, geographical barriers, or even having the time to participate in research.
It’s our job as researchers to acknowledge the negative history of research, and to commit to producing research that focuses on the wellbeing of the communities we wish to participate in. It’s also our job to meet our communities where they are. To do so, we have to be in touch with them and find out what they need from us. We have to make sure that our purpose is transparent, and that we can create and provide things that benefit and compensate the communities participating.
KidTalk is committed to doing just that. Our scientists have daily conversations about what our families are facing, how our app and our approach to research is going to benefit them, and what other programs we can incorporate to further address needs.
Across the country, families are facing different challenges and different needs. This is also why research is important. If we can capture data from all kinds of families in all kinds of communities, while also collaborating with them, then our research can mean something to those families in Washington, D.C. AND those families in Portland and Boston. It can lead to solutions that are specifically developed with these communities in mind, instead of a one-size-fits-all solution (that definitely won’t fit all).