Strengthening Observational Studies: Community Engagement and Data Practices
Emily Ricotta, PhD, MSc outlines the importance of involving affected populations and refining data collection methods to improve early decision-making during epidemics
Observational studies have long played a pivotal role in clinical research and public health responses during epidemics. These studies provide vital data that inform early decisions, particularly in the early stages of an outbreak when time is of the essence. Tthey offer immense value, they also come with challenges, especially regarding data accuracy, relevance, and proper communication.
In the last part of our recent discussion with Emily Ricotta, PhD, MSc, an infectious disease epidemiologist at the Uniformed Services University of the Health Sciences, she emphasized the importance of engaging affected communities and the broader research community to maximize the effectiveness of observational studies. Ricotta’s insights highlight the need for a more refined approach to community engagement and research design.
Ricotta discussed that community engagement in research involves two key components, “First, there’s the community engagement involving members of the population where the research will be conducted,” Ricotta explains. “This could be individuals currently impacted by a particular infectious disease. For example, during COVID, I did a study looking at COVID vaccines and people with immune disorders. You want to talk to the people who are directly affected because, as a researcher, I may have my own ideas about what’s important to understand, but that doesn’t necessarily align with what the affected people want answered.”
Ricotta noted that sometimes researchers may approach a community with a question that seems logical to them but could have an entirely different meaning to that community. Furthermore, cultural taboos or varying local practices may prevent researchers from collecting the data they need. This underscores the importance of early and continuous community engagement to ensure that research is culturally relevant and respectful.
“Often, you might go into a setting thinking, ‘Oh, here’s a question. It makes sense to me,’ but in reality, it means something totally different to that community,” she said. “Or, you may be unable to collect data you need because it’s taboo in that culture or because they don’t do things the same way. That’s why it’s critical to engage early and continuously with the communities you will be working with, and they should be our partners.”
Ricotta also highlights the significance of engaging with those within the research community who design studies and collect data. There is often a lack of understanding about how to collect and manage data in a way that enhances its usefulness across studies.“Engaging with the research community, particularly those who design studies and gather data, is key,” Ricotta explained. “When data is collected and stored properly, it becomes more valuable and can be integrated with other databases, benefiting multiple studies.”
She further emphasizes the need to understand the challenges faced by data collectors, “Many times, data collectors are managing care while also collecting research data. We need to understand how to make their lives easier while still obtaining the necessary data.”
While randomized controlled trials (RCTs) continue to dominate the field of clinical research due to their rigor, Ricotta emphasizes that observational studies deserve equal attention, especially in epidemic settings where they are often the only available means of gathering early data.
“RCTs get a lot of funding and focus when it comes to improving study design, but it’s just as critical that we apply the same effort to observational studies,” Ricotta said. “There are ways to make these studies more accessible, create standards, and maintain the flexibility needed to conduct studies in a variety of settings.” Ricotta and her colleagues argue that improving observational studies will help create a stronger data foundation, providing a clearer picture of epidemic dynamics and improving the efficacy of public health responses.
“We want to hear feedback from others about how to improve observational studies and build better data standards,” Ricotta concluded. “This will ultimately lead to more accurate, actionable data that can guide decision-making during future outbreaks.”
Listen to the first part of our interview with Ricotta here: The Role of Observational Studies in Epidemic Responses
