How social media is opening new study opportunities.
Katharine Krevans Brieger
A group of researchers is using social media to engage tens of thousands of individuals in health and genetic research and education.
In 2015, researchers from University of Michigan Medical School and School of Public Health launched a new Facebook app to securely collect health information from consenting participants. As the first large-scale health and genetic study to recruit via social media, the Genes for Good project has over 80,000 participants, over 27,000 participants who have been genotyped, and nearly 3 million completed health history and health tracking surveys. Their work appears June 13 in The American Journal of Human Genetics.
Katharine Krevans Brieger, MD/PhD student, Department of Epidemiology, University of Michigan Medical School and School of Public Health, and colleagues successfully recruited participants from all 50 U.S. states, representing a wide range of racial, ethnic, and socioeconomic backgrounds.
“Historically, genetic studies were largely made up of people who lived near university medical centers, inadvertently excluding people who lived in more remote areas or who didn’t have the time and money to travel,” Krevans Brieger says. “Enabling remote participation with Genes for Good allows many of these people to participate in research for the first time.”
Health history and daily tracking surveys are administered through a Facebook application. Health history surveys cover topics such as diabetes, cancer, skin pigmentation, and neighborhood environment, while health tracking surveys assess time-varying information such as sleep, alcohol use, weight, and mood. Participants are provided with summary information about their health history and, for daily tracking surveys, summaries were generated of each participant’s health behavior over time as well as summary statistics for the entire study. Participants who complete a minimum number of surveys are mailed a saliva sample kit to collect DNA for genotyping. They are then provided with an ancestry analysis as well as their raw genetic data to download.
Participants are in control of their data; they choose which surveys to take and what information to provide. All research use of the data is kept separate from any personal information, such as names and addresses used to send the saliva sample kits.
The phenotypic and genotypic data that has been collected appear valid and reliable, according to the researchers.
“When looking at health conditions such as important risks of cardiovascular disease, we observed similar rates of high cholesterol, hypertension and smoking to those reported in nationally representative epidemiologic studies,” she says. “This was very encouraging, as we wanted to be sure that not only was the sample large, but also that the findings would be generalizable to our population of interest-in this case, U.S. residents. We were also able to identify previously reported associations between specific genetic variants and traits such as BMI, as well as conditions such as type 1 and type 2 diabetes. Finally, we validated a new incentive structure, essentially relying on altruism and the return of survey response summaries and genetic data to participants.”
Because public health genetics research requires very large sample sizes that are linked to useful medical data, it is vital that we develop new ways of reaching more participants, and more diverse participants, according to Krevans Brieger. “We built a more diverse participant pool than is typically possible from any individual academic medical center, and we therefore demonstrate the viability of this research approach,” she says.
The researchers note that Facebook was only used for recruitment and logging into the app, but once in the app all data was encrypted and stored on private Genes for Good servers. Facebook does not have access to any of the data entered by participants.
As healthcare is increasing digitized and sometimes provided remotely, it is essential that methods of communication and research keep pace, according to Krevans Brieger. “The effectiveness of Genes for Good’s recruitment might serve as an example for other education projects or general communication with patients,” she says. “I think it’s especially important to note that the recruitment happened organically and without paid advertising, instead relying on participants publicizing the study through their own networks. A major challenge in current healthcare is how to reach broad, diverse populations, particularly those who tend not to come into providers regularly. We have demonstrated that volunteerism through social media can interact with health data in a private, secure way.”
Another unique aspect is that raw genetic information is returned to participants. “Other research studies traditionally have not returned raw genetic information, but we believe that each participant has the right to their complete data,” she says.
“Additionally, some people are more willing to share sensitive information via an online survey, so we can collect large data sets on behaviors such as addiction patterns or sexual health history,” Krevans Brieger says. “Participants may prefer to answer these types of questions online rather than reporting in person with an interviewer or their physician.”
One other major advantage in a study design with a social network or online aspect is that those with rare conditions can spread interest in a given study through already existing advocacy groups and social forums, the researchers add.
“I think the ability to easily contact and follow-up with participants has a couple important perks,” says Krevans Brieger. “First, we have longitudinal data, so we are able to study patterns in things such as sleep and anxiety, as opposed to just surveying at one point in time. Second, we can reach out to participants when new surveys are available or when other follow up information would be useful, particularly for participants with rare diseases.
“People are excited about having ownership of their own information,” she says. “Our hope is that by giving people access to their own data and having an educational component to the study we can overcome some of the hesitancy that people may have about health and genetic study participation. Many of the genetic and environmental risk factors that researchers are interested in studying now require very large samples, and so reaching and engaging diverse populations, and earning their trust and enthusiasm, is becoming more and more important.”