BOSTON (Reuters) - Gaping holes exist in data on lesbian, gay, bisexual and transgender individuals and more research into their lifestyles is needed for medical authorities to better serve them, a report released on Thursday shows.
The report, authored by the Institute of Medicine and commissioned by the National Institutes of Health, found a lack of research on LGBT individuals.
It lays the groundwork to close that information gap, suggesting more research into social influences, barriers to equitable health care and the differing needs of various generations of LGBT people.
"This is a sea change in establishing the scientific importance of research in LGBT health," said Dr. Caitlin Ryan, director of the Family Acceptance Project at San Francisco State University and a contributor to the report.
The report summarized what many experts already know about the population, including that LGB youths are at increased risk for suicide and depression, that HIV-AIDS primarily affects young black men who have sex with other men and that LGBT people are frequently targets of discrimination and violence.
Most practitioners, however, are not well educated in how to care for the LGBT population, including understanding sexual orientation development, gender identity and the impact of stigma and discrimination on health, the report said.
All this matters because it affects doctors' ability to ask the right questions about support at home, to make referrals, and to order the proper tests for physical and mental health care, Ryan said.
With a clearer picture of the patients they serve, doctors can provide better healthcare, policy makers can fund appropriate prevention programs and researchers will understand which problems need more study, Ryan said.
NIH director Dr. Francis Collins said going forward all research should be viewed as an opportunity to collect demographic data on the LGBT community.
"The report makes clear that we have enormous gaps in our understanding of the health issues confronting LGBT people," Collins said.
"One critical issue is that we have not systematically or accurately collected data from research participants about sexual orientation or gender identity."
One of the best ways to gather data would be to include questions on existing surveys used by health departments to collect information about the general population, the report said.
"The inclusion of questions on sexual orientation and gender identity on federally funded surveys, if it occurs, is a huge step forward in understanding LGBT health issues and disparities," said Ryan.
However, getting the right data to researchers might prove to be more difficult than asking the right questions. Research team members at a Washington news conference on the report said there are methodological, funding, and political barriers.
"This is something that we've done for other populations and quite frankly we simply should be doing it for this population," physician and Northwestern University professor Robert Garofalo told reporters.
"This document goes a long way in framing it from a very scientific perspective and it's entirely now a matter of political will to get it done."
In separate comments, Judith Bradford, director of the center for population research in lesbian, gay, bisexual and transgender health at The Fenway Institute, credited the report with shining a spotlight on the fact that the LGBT community has different healthcare needs.
For example, older LGBT individuals are less likely to have children than their heterosexual counterparts, and less likely to receive care from adult children, said Bradford.
She said particular attention needs to be paid to ensuring that as the LGBT community ages, there will be appropriate health services available.
Dr. Harvey Makadon, director of education at The Fenway Institute and a contributor to the report, said clinicians need to feel comfortable talking about sexual orientation and gender identity and to understand what to do with that information.
National Gay and Lesbian Task Force executive director Rea Carey praised the report and said it "exposes the disturbing fact that our community has been largely ignored in most medical and health services research."
In response to the report findings, NIH said it will begin improving methodology for collecting survey data on sexual orientation and gender identity and consider new ways NIH can support recommended research initiatives.
(Reporting by Lauren Keiper; Additional reporting by Wendell Marsh in Washington; Editing by Barbara Goldberg and Jerry Norton)