Northwestern is home to the Institute for Sexual and Gender Minority Health and Wellbeing, the largest lesbian, gay, bisexual, transgender (LGBT) health-focused research center in the country; for investigators exploring health issues faced by sexual and gender minority patients, improving the recruitment of study participants is a critical need.
“One of the biggest hurdles in LGBT research is finding a group of people who may face discrimination, who may not be very publicly out,” said Dr. Brian Mustanski, professor of Medical Social Sciences and director of the Institute for Sexual and Gender Minority Health and Wellbeing (ISGMH). “It’s not like we can download a list of all the gay teens in the Chicago area and start making phone calls — we’ve had to develop creative ways of reaching them.”
The institute’s recruitment strategy includes online advertisements hosted on social media and other mobile apps, in addition to enlisting LGBT youth to recruit each other, according to Dr. Mustanski. Staff and investigators also represent the institute at Pride and other Chicago-area events.
“At this point we have essentially established our own small advertising agency within the Institute,” said Dr. Mustanski, also a professor of psychiatry and behavioral sciences and of psychology at the Weinberg College of Arts and Sciences. “Our staff are experts in creative ads and campaigns on Facebook, Twitter and Instagram, for example. These programs are constantly changing and so we need to go where the community is.”
The institute has also worked to improve data collection, examining how diary studies — the practice of relying on study participants to self-report behavior — may actually influence the behavior itself.
“We wanted to know: Do people change their behavior simply because we’re asking them questions about the behavior?” said Dr. Michael Newcomb, assistant professor of medical social sciences and lead author of a study recently published in the journal AIDS and Behavior.
The study investigators randomly assigned young men who have sex with men to document their sexual risk and substance use behavior, either daily, weekly or not at all. They found participants who recorded their behavior decreased their sexual risk behavior and illicit drug use over the course of the study.
“My takeaway is that some people do change their behaviors when they are asked about them frequently, but this seems to be limited to behaviors that are ‘riskier’ — like condom-less sex and illicit drug use — as opposed to drinking and marijuana use,” Dr. Newcomb said.
According to Dr. Newcomb, online interventions such as mobile apps may have utility for reaching LGBT youth who are isolated from the LGBT community, but online intervention can only go so far.
“I’m excited that yes, people can change their health behaviors simply by self-monitoring,” Dr. Newcomb said. “However, many if not most people will require some kind of more tailored or personalized intervention in order to change some of their health-related behaviors.”
Improving study methods has a renewed national focus as well — as part of the 21st Century Cures Act, signed into law by in 2016, the NIH was directed to improve research related to the health of sexual and gender minority populations. As part of that initiative, Dr. Mustanski recently co-chaired a workshop on the methodological challenges of LGBT research, sponsored by the NIH Sexual and Gender Minority Research Office. Dr. S. Bryn Austin, professor of social and behavioral sciences at Harvard T.H. Chan School of Public Health, co-chaired the workshop.
The workshop reviewed current sexual orientation and gender identity data collection efforts at the national and state levels, identified gaps in sampling approaches and developed a national research agenda to improve measurement and sampling methods.
“The attendees, who came from government, academia and community organizations, were extremely engaged with us in identifying gaps and research needs,” Dr. Mustanski said. “Methodology underlies everything we do in sexual and gender minority health research and strong methods are critical to our ability to make valid conclusions about health disparities and how to address them.”