Nav: Home

Use of Internet in medical research may hinder recruitment of minorities, poor

July 28, 2016

Recruiting minorities and poor people to participate in medical research always has been challenging, and that may not change as researchers turn to the internet to find study participants and engage with them online, new research suggests. A study led by researchers at Washington University School of Medicine in St. Louis concludes that unless explicit efforts are made to increase engagement among under-represented groups, current health-care disparities may persist.

In a study of 967 people taking part in genetic research, the investigators found that getting those individuals to go online to get follow-up information was difficult, particularly if study subjects didn't have high school educations, had incomes below the poverty line or were African-American.

The new findings are available online July 28 in the journal Genetics in Medicine.

"We don't know what the barriers are," said first author Sarah M. Hartz, MD, PhD. "We don't know whether some people don't have easy access to the internet or whether there are other factors, but this is not good news as more and more research studies move online because many of the same groups that have been under-represented in past medical research would still be missed going forward."

Hartz and her colleagues offered participants detailed information about their ancestry as part of genetic research to understand DNA variations linked to smoking behavior and nicotine addiction. Some 64 percent of the people in the study answered a survey question stating that they were either "very interested" or "extremely interested" in that information, but despite repeated attempts to get the subjects to view those results online, only 16 percent actually did.

The numbers fell to 10 percent or lower among people with low incomes and no high school diplomas, as well as among study subjects who were African-American. Such groups traditionally have been under-represented in medical research studies.

"This is particularly relevant now because of President Obama's Precision Medicine Initiative," said Hartz, an assistant professor of psychiatry.

The project seeks to recruit 1 million people and analyze their DNA to understand risk factors related to a variety of diseases. Ultimately, the project seeks to develop personalized therapies tailored to individual patients.

"Our results suggest that getting people to participate in such online registries is going to be a challenge, particularly if they live below the poverty line, don't have high school diplomas or are African-American," Hartz said.

Because 84 percent of American adults now use the internet and 68 percent own smartphones, some researchers have believed that traditional barriers to study recruitment -- such as income, education and race -- would be less important in the internet age.

In the Precision Medicine Initiative, researchers plan to collect information about diet, exercise, drinking and other behaviors, as well as about environmental risk factors, such as pollution. The study will allow participants to sign up by computer or smartphone, and recruitment aims to match the racial, ethnic and socioeconomic diversity of the United States. The idea is to make it as easy as possible to enroll, but Hartz's findings suggest signing up on the internet won't eliminate every barrier.

As part of the Washington University study, the smokers who participated were given the opportunity to have their DNA analyzed by 23andMe, a personalized genetics company. The participants were able to receive reports detailing where their ancestors came from, based on 32 reference populations from around the world. That information was available through a secure, password-protected online account set up and registered by the individual through the 23andMe website.

Each subject received an e-mail from the researchers with instructions on how to log on to the 23andMe website and retrieve the information. After a few weeks, the researchers sent another e-mail to those who did not log on. Then, the researchers made phone calls, and, if the subjects still didn't log onto the site, they were sent a letter in the mail.

Even after all of those attempts, only 45 percent of the European-American participants who had high school educations and lived above the poverty line ever looked at the information. Among African-American participants who graduated from high school and lived above the poverty line, only 18 percent logged onto the site.

"Our assumption that the internet and smartphone access have equalized participation in medical research studies doesn't appear to be true," Hartz said. "Now is the time to figure out what to do about it and how to fix it, before we get too far along in the Precision Medicine Initiative, only to learn that we're leaving some under-represented groups of people behind."
-end-
Hartz SM, Quan T, Ibiebele A, Fisher SL, Olfson E, Salyer P, Bierut LJ. Significant impact of education, poverty and race on internet-based research participant engagement. Genetics in Medicine, advance online publication. July 28, 2016.

This work was supported by the National Institute on Drug Abuse, National Cancer Institute, National Institute of General Medical Sciences and the National Institute on Alcohol Abuse and Alcoholism of the National Institutes of Health (NIH), grant numbers K08 DA032680, P01 CA089392, T32 GM07200, UL1 TR000448, TL1 TR000449 and F30 AA023685. Additional funds from The Foundation for Barnes-Jewish Hospital.

Washington University School of Medicine's 2,100 employed and volunteer faculty physicians also are the medical staff of Barnes-Jewish and St. Louis Children's hospitals. The School of Medicine is one of the leading medical research, teaching and patient-care institutions in the nation, currently ranked sixth in the nation by U.S. News & World Report. Through its affiliations with Barnes-Jewish and St. Louis Children's hospitals, the School of Medicine is linked to BJC HealthCare.

Washington University School of Medicine

Related Medical Research Articles:

Patients say ask before using medical records for research
A new study led by Michigan Medicine researchers finds that even when patients understand the overall benefit to society, they still want to be able to give consent at least once before their de-identified data is used for research.
Most patients willing to share medical records for research purposes
In a survey, UC San Diego researchers report most patients are willing to share medical records for research purposes, with a few caveats.
Tax hurts investment in medical device research and development
New Iowa State University research shows companies cut funding for research and development in response to a tax imposed on medical devices as part of the Affordable Care Act.
Centralized infrastructure facilitates medical education research
The Council of Academic Family Medicine Educational Research Alliance has enabled a large number of research teams to conduct meaningful scholarship with a fraction of the usual time and energy.
Sex, gender, or both in medical research
Only a minority of medical studies take sex and gender into account when analyzing and reporting research results.
Research!America to honor medical and health research advocacy leaders
Research!America's 21st annual Advocacy Awards will honor outstanding advocates for research whose contributions to health and medicine have saved lives and improved quality of life for patients worldwide.
Ohioans say it is important for the state to lead in education and medical research
An overwhelming majority of Ohio residents say it is important for the state to be a leader in education (89 percent) and in medical and health research (87 percent), according to a state-based public opinion survey commissioned by Research!America.
Medical research influenced by training 'genealogy'
By analyzing peer-reviewed scientific papers that examined the effectiveness of a surgical procedure, researchers at University of California, San Diego School of Medicine provide evidence suggesting that the conclusions of these studies appear to be influenced by the authors' mentors and medical training.
Diversity in medical research is a long way off, study shows
Despite Congressional mandates aimed at diversifying clinical research, little has changed in the last 30 years in both the numbers of studies that include minorities and the diversity of scientists being funded, according to a new analysis by researchers at UCSF.
Research!America to honor leaders in medical and health research advocacy
Research!America's 20th annual Advocacy Awards will honor exceptional advocates for research whose achievements in their fields have brought hope to patients worldwide.
More Medical Research News and Medical Research Current Events

Trending Science News

Current Coronavirus (COVID-19) News

Top Science Podcasts

We have hand picked the top science podcasts of 2020.
Now Playing: TED Radio Hour

Climate Mindset
In the past few months, human beings have come together to fight a global threat. This hour, TED speakers explore how our response can be the catalyst to fight another global crisis: climate change. Guests include political strategist Tom Rivett-Carnac, diplomat Christiana Figueres, climate justice activist Xiye Bastida, and writer, illustrator, and artist Oliver Jeffers.
Now Playing: Science for the People

#562 Superbug to Bedside
By now we're all good and scared about antibiotic resistance, one of the many things coming to get us all. But there's good news, sort of. News antibiotics are coming out! How do they get tested? What does that kind of a trial look like and how does it happen? Host Bethany Brookeshire talks with Matt McCarthy, author of "Superbugs: The Race to Stop an Epidemic", about the ins and outs of testing a new antibiotic in the hospital.
Now Playing: Radiolab

Speedy Beet
There are few musical moments more well-worn than the first four notes of Beethoven's Fifth Symphony. But in this short, we find out that Beethoven might have made a last-ditch effort to keep his music from ever feeling familiar, to keep pushing his listeners to a kind of psychological limit. Big thanks to our Brooklyn Philharmonic musicians: Deborah Buck and Suzy Perelman on violin, Arash Amini on cello, and Ah Ling Neu on viola. And check out The First Four Notes, Matthew Guerrieri's book on Beethoven's Fifth. Support Radiolab today at Radiolab.org/donate.