Segments of the population with the lowest health status are unlikely to be able to take advantage of the benefits of big data, says Megan Doerr, MS, LGC, principal scientist at Seattle-based Sage Bionetworks.
Doerr and colleagues researched this closer.1 “We were thinking about efforts in citizen science and patient-led science, and the research needs of ethnically diverse communities,” Doerr says.
How should one use big data to move beyond community engagement to the point where research actually was community-led? The researchers interviewed 16 community leaders about their opinions on about big data, with varying levels of research participation. Some had already participated in robust collaborations with traditional research institutions.
“Some had struck out on their own, leading citizen science investigations, and others were just getting their feet wet in the research ecosystem,” Doerr reports.
Some were suspicious of big data, labeling it elitist and exploitative, expressing frustration that they could not get access to its supposed benefits. A few talked about feeling like they had to entice researchers to study issues of concern to their communities. “Others said they had tried, and were done with that, and just wanted to be able to ask and answer their own questions,” Doerr notes.
Accesses to big data creates new possibilities in terms of the citizen science movement. “It is reimagining who gets to do what in science,” Doerr observes. For instance, communities could identify questions that need answers, and hire a data scientist to analyze publicly available data. Environmental and water pollution data could be analyzed on how it correlates to disease incidence in a particular community.
The next step is to determine the logistics of how to empower communities with the tools they need to ask and answer their own research questions. The focus is on engaging communities that have been historically excluded from research. Developing a research ethics framework is an important step. “We hope to extend our work to support community leaders collectively developing their own system of ethics review for their research endeavors,” Doerr says, noting this need is highlighted by the proliferation of unregulated health research with wearable devices.2
When communities lead their own research, they will be able to contextualize their findings. “This is the opposite of helicopter science, where people are dropping into a community and coming up with answers for them to implement,” Doerr explains. The overarching focus is democratizing big data. Researchers and community leaders both need to give input on barriers to, and facilitators of, the use of big data at the community level. “There needs to be a cohesive bridge between the traditional research establishment and community-led science,” Doerr suggests.
- Grayson S, Doerr M, Yu JH. Developing pathways for community-led research with big data: A content analysis of stakeholder interviews. Health Res Policy Syst 2020;18:76.
- Rothstein MA, Wilbanks JT, Beskow LM, et al. Unregulated health research using mobile devices: Ethical considerations and policy recommendations. J Law Med Ethics 2020;48:196-226.