#BWLGBTI Day 3 Part 2: Community-based research is still important

dwayne

 

 

Dwayne Steward

LGBTQ Health Advocate
Columbus Public Health

 

 

We’ve come to the end of the LGBTI Health Research Conference at Baldwin Wallace University. This has been a very life-changing experience, for which I am truly grateful. Being in the room with so many experts that have and are currently making groundbreaking changes in the country, and around the world, regarding the inclusion of LGBTI communities in health research has been phenomenal. I can’t thank the Network for LGBT Health Equity enough for this amazing opportunity.

Jacob Nash

Jacob Nash

The conference began it’s last half with two lively panel discussions. The first was “Community Perspectives Regarding LGBTI Health” featuring Jacob Nash (transgender activist and director of Margie’s Hope), Alana Jochum (Equality Ohio’s Northeast Ohio Regional Coordinator) and Maya Simek (program director for The LGBT Community Center of Greater Cleveland). Jochum made some very interesting points regarding how LGBTI health research has made historic advances in LGBTI rights possible. She referenced several court cases that have used the statistics compiled by researchers, several in the room, in major courtroom arguments for marriage equality. Her examples helped further illustrate the need for the work of those attending the conference. Nash and Simek put out calls to researchers for more specified research studies on marginalized populations and offered insights on the health issues they’re seeing among marginalized populations. They both reiterated the need for more collaboration between activists and health researchers.

The conference officially ended with “LGBTI Health and Human Rights in International Settings” with a very dynamic panel of LGBTI health community organizers from Latin America and India.

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“LGBTI Health and Human Rights in International Settings” Panel

Wendy Castillo, a community organizer from El Salvador who has done work providing safe spaces for lesbian and transgender women, spoke at length about the tragic murders that continue take the lives of transgender women regularly in El Salvodor and the struggles organizations there face with trying to keep transgender women safe. Daniel Armando Calderon and Alejandro Rodriguez, both community organizers around issues facing the MSM community in Columbia, discussed how they try to decrease barriers for “heterosexual MSM’ and other special populations needing HIV care and other health services.

Vivek Anand, of Humsafar Trust, closed out the conference with more detail regarding his efforts regarding the recent re-criminalization of homosexuality in India. His organization has courageously come to the forefront of attacking this law that was passed by the country’s Supreme Court after massive efforts from religious leaders. I thinks it quite admirable that the work he’s doing is heralding and sometimes dangerous, but he faces it head on with an upbeat attitude. He ended his presentation with a video of Gaysi‘s (an LGBT advocacy organization in Mumbai) #notgoingback campaign, one of the efforts to build awareness and garner support for repealing the law. The upbeat video, featuring Pharrell Williams’ massive hit song “Happy,” is a perfect representation of Anand’s bubbly activist spirit.

And thus we end our time together my friends. Please always remember the words of Dr. Martin Luther King that I used to start this blog series, “Our lives begin to end the day we become silent about things that matter.” Let’s never end this very important conversation!

#BWLGBTI Day 3 Part 1: The IOM Report

dwayne

 

 Dwayne Steward

 LGBTQ Health Advocate
 Columbus Public Health

 

 

 

Back at Baldwin Wallace for the last day of the LGBTI Health Research Conference and the morning is being spent on very detailed analysis of the Institute of Medicine‘s National Institutes of Health-commissioned 2011 report “The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding” The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding.”

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Dr. Walter Bockting, of Columbia University who served on a committee that penned the report, returned to the stage to offer a brief history of the document, it’s findings/recommendations and next steps. Most striking was that the main point made by the study, which is there’s a general lack of research when it comes to sexual orientation and gender identity, a fact many of us are very much aware of, but I think the impact of this report is in the robust list of recommendations the study produced for NIH. Here are few:

  • NIH needs to implement a comprehensive research agenda.
  • Sexual orientation and gender identity data needs to be collected in all NIH federally-funded research.
  • Sexual orientation and gender identity data also needs to be collected in electronic medical records.
  • Research training should be created by NIH that is specific to sexual orientation and gender identity.
  • Encourage NIH grant applicants to address the inclusion or exclusion of sexual orientation and gender identity. (This is already a requirement for other marginalized groups, such as racial minorities.)
  • Identify sexual orientation and gender identity among the NIH official list of minority populations with disproportionate health disparities.

Dr. Bockting himself said at one point what I’ve been thinking since I read the study months ago, “A year ago I was skeptical about if we would receive the support needed to see these recommendations through. Without support it will be very difficult for us to make any progress.” However he went on to say, “But things are really beginning to look up and I think we’re going to begin making some strides.”

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(From left) Dr. Alexander, Dr. Bradford and Dr. Bockting

Dr. Bockting’s statements were overwhelming verified later by Dr. Rashada Alexander, a Health Science Policy Analyst at NIH. She discussed how NIH was responding to the IOM report, most notably the creation of the NIH LGBTI Research Coordinating Committee whose task is to create a national strategic plan for sexual orientation and gender identity research. I was pleasantly surprised to hear that this group existed and will be releasing their strategic plan by the end of the year. She also went on to discuss a funding opportunity announcement NIH has released specific to LGBTI health research and and other efforts of the NIH regarding LGBTI health.

It’s very empowering to know that our federal government is taking an intentional approach to studying LGBTI health, especially when this was something that wasn’t possible just five years ago.  I feel as if I’m watching systemic change take place right before my eyes. It’s a very exciting time to be an LGBTI health researcher!

NIH Issues Long-Awaited & Detailed Response to IOM LGBT Report

Scout

Scout, Ph.D.
Director, The Fenway Institute’s Network for LGBT Health Equity

Back in June we circulated a quote from the Deputy Director at National Institutes of Health, Dr. Tabak, about their new LGBT health research priorities (see the picture). We knew these priorities were the result of their ongoing work responding to the Institute of Medicine report on LGBT health they commissioned earlier. Today we now see the full scale of the work NIH has been doing to respond to the specific recommendations laid out by the IOM. Make no mistake, this is a milestone in LGBT health.

We’ll be doing a deeper analysis of this report in time, but today as the report is first released I want to just highlight a few of the biggest takeaways.

1. There are many substantive issues to be pleased about. The report provides insight and plans around a large number of important areas. As just a few examples: there’s a strong call for more data collection, a smart analysis of the need for and best strategies for career development resources, and an emphasis on specific underserved populations such as transgender people, among others.

2. The lack of tobacco research is highlighted. In the year of LGBT research they analyzed, only 1.4% of the portfolio addressed smoking and health. This is a decided contrast to the mounting evidence that smoking is likely to be our top health burden as a set of communities. To quote the first paragraph of the summary of findings, from the very first page of the report: “There appears to be relatively little research in several key health areas for LGBT populations including the impact of smoking on health, depression, suicide, cancer, aging, obesity, and alcoholism.”

3. It is very gratifying that this report is getting top flight attention at NIH. White papers without leadership support can collect dust very fast. It’s excellent to see that this report was released with a preface by the head of NIH, Dr. Frances Collins. This sends a signal internally and externally that this report is not to be ignored.

Great job NIH!

Read the official Fenway response here. And read all of NIH’s releases today at the links below.

Public Health Stakeholder Call Today12PM EST, Dec 14: Public Release of the Institute of Medicine Report on Scientific Standards for Studies on Modified Risk Tobacco Products

The Family Smoking Prevention and Tobacco Control Act requires the FDA to consult with the Institute of Medicine (IOM) on the design and conduct of studies and surveillance required for the assessment and ongoing review of modified risk tobacco products. Tomorrow, the IOM will release a report on the design and conduct of studies which the FDA will use in the assessment and ongoing review of modified risk tobacco products. Please see below for an invitation from the Institute of Medicine.
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The Institute of Medicine report, “Scientific Standards for Studies on Modified Risk Tobacco Products,” will be publicly released at 11:00 AM EST on December 14th, 2011.
This report provides advice to the FDA on the minimum standards for scientific studies to allow the marketing of modified risk tobacco products, and for post-market studies of marketed products, as described in section 911 of the Family Smoking Prevention and Tobacco Control Act of 2009.

More information on the report can be found at: www.iom.edu/modifiedrisktobacco
The IOM will be hosting a teleconference briefing about the report for interested parties. During the briefing, the chair of the committee and several committee members will briefly review the main recommendations and findings of the report, and will also be available to answer questions.

The teleconference will be from 12:00 PM EST to 12:45 PM EST.

Phone Number: 866-528-2256
Access Code: 3343154

If you have questions, please email AskCTP@fda.hhs.gov or call 1-877-CTP-1373.
Food and Drug Administration | 9200 Corporate Blvd | Rockville, MD 20850 | www.fda.gov/tobacco

In Sickness & In Health: LGBT Health Issues Make Steady Gains At Federal Level

In Sickness & In Health: LGBT Health Issues Make Steady Gains At Federal Level.

Cross post by Dr. Scout which appeared today on the DailyKos site. Click the link above, sign up for DailyKos, and comment. 

For those of you who do not know about DailyKos the blog is defined as a: Democratic blog, a partisan blog. One that recognizes that Democrats run from left to right on the ideological spectrum, and yet we’re all still in this fight together. We happily embrace centrists like NDN’s Simon Rosenberg and Howard Dean, conservatives like Martin Frost and Brad Carson, and liberals like John Kerry and Barack Obama. Liberal? Yeah, we’re around here and we’re proud. But it’s not a liberal blog. It’s a Democratic blog with one goal in mind: electoral victory. And since we haven’t gotten any of that from the current crew, we’re one more thing: a reform blog. The battle for the party is not an ideological battle. It’s one between establishment and anti-establishment factions. And as I’ve said a million times, the status quo is untenable.

PopCtr Mtg: Panel Discussion on Probability and Non-Probability Methods

Scoutby Scout
Director, Network for LGBT Health Equity
A project of The Fenway Institute in Boston, MA

SCIENCEBABBLE ALERT – This is a meeting for scientists, despite my efforts, some of this may get technical.

411 on the issue

Probability sampling = getting a group of people for your research that is statistically proven to be a random selection from the full population of interest, thus the statistics support you being able to draw conclusions for the full population based on the info from this random subgroup. (Like if 50% of your probability sample of LGBT people parachute, you can confidently say 50% of all LGBT people parachute.)

Non-probability sampling = any non-random sample of people. (Like if you do a survey at pride, it’s a non-probability sample.) Unfortunately, the statistics then do not support being able to generalize these findings to the full population, because there’s a chance bias might have snuck in. (Like, maybe pride participants aren’t as closeted as other LGBT people, so even if 50% of your sample are in LGBT parachuting clubs, you can’t say 50% of all LGBT people are in such clubs.)

Why’s this a big issue? Probability sample data is the gold-standard for drawing conclusions, but we have much less of this for LGBT people, mostly because LGBT measures aren’t included on the monster federal surveys that are the big probability studies.

Panel Members:

  • Dan Kasprzyk, Ph.D. Vice President of NORC (which I realize is so well known as one of 2 fanciest survey shops that his bio doesn’t even say what NORC stands for… so just know, NORC=surveys)
  • Melissa Clark, Ph.D. Brown University Department of Community Health
  • Margaret Rosario, Ph.D.
  • Jeffrey Parsons, PhD. Hunter University

The Panel

Dr. Kasprzyk led the panel off talking about some of his interesting experiences as part of the Institute of Medicine committee for the recent LGBT report. He emphasized that the choice of probability or non-probability might really not be as important as the reporting and impact of any well-designed study, regardless of the methods chosen. Then he moves onto talking about the federal surveys. “If the federal gov’t added LGBT measures to the American Community Survey, then allowed oversampling, that alone would allow the community to target populations, whether it’s regional, city, rural, you name it, and we’d be much better off. But we have to go beyond NHANES, you have to get on other surveys, NHIS and especially the Labor Force Survey would be very valuable.” He emphasized how important it was to get measures on these large full-probability surveys, “because otherwise you remain invisible.”

“Probability data is very important, it is the gold standard, in Washington, that’s what people are going to listen to. I think the real advancement in healthcare policy comes from really pushing hard with the federal government to have these questions on those surveys, and that point cannot be diminished. I think it’s really important that we actually stay focused on the federal government and become part of that health policy debate.” Dr. Kasprzyk

Dr. Clark followed (that’s Melissa to you and me) and led off by echoing all of Dr. Kasprzyk’s points. She says “”That’s usually how I end every talk I give about sexual minorities, I say ‘please help us get these questions added.'” She talked about her experience at Brown University and how much she’s been working to try to get the non-LGBT researchers to include LGBT measures. Through this effort, she’s managed to take one of the IOM report recommendations and institutionalize it, “Now when there’s a new study, people have to either include sexual minorities or explain why they are not.” Kudos to Melissa, let’s hope NIH follows suit!

Next up was Margaret Rosario. She warns us that while probability samples are important, most of our real explanatory data will come from non-probability samples because they are so much cheaper they have more latitude to go much deeper into issues, explore causal models, etc. For her, the bottom line is either approach can be useful, it’s often an issue of cost, if we have the chance to do the higher costs full-probability samples, excellent, if not, let’s just do excellent non-probability studies. Lastly she also weighs in on the importance of getting LGBT measures on the large surveys, “For the probability studies, please please, whatever we can do to get questions on there, do be able to identify the population as best we can, we should definitely do that.”

The panel was rounded out by Jeff Parsons. He talked about how it always seems there’s a flavor of the day at NIH for the newest rage for sampling, some of which are just never really viable in the field. “You can’t just count every 9th person who goes in the bar and pull them for the study, it doesn’t work.” Tonda Hughes from UIC echoes that sentiment, noting that the popular method, Respondent Driven Sampling, has never worked for her in samples of women.

As the discussion opens up to audience comments, there’s an interesting suggestion from Jim McNally, a director at ICPSR (the Intra-university Consortium of Political and Social Research, probably the largest data library in the country). one of the University of Michigan (ICPSR) scientists… “We recommend people work to create a small strong full probability sample and then ask the same questions you have on the federal surveys. That way you have policy strength to compare to the federal questions.”

Center for Population Research in LGBT Health Holds Annual Convening

Scoutby Scout
Director, Network for LGBT Health Equity
A project of The Fenway Institute in Boston, MA

My Non-Sampling Error Experience

Ok, I’ve fled from the very exciting Netroots Nation conference to get back to Boston because today and tomorrow mark the 3rd annual convening of one of The Fenway Institute’s other major initiatives, the Center for Population Research in LGBT Health. Not only does this mean I get to hang with some of my farflung friends for two days, not only does it mean the largest gathering of trans health researchers I’ve seen, not only does it mean I get to meet many upcoming researchers involved in the mentorship program, but right now, it’s also the biggest meeting about LGBT research that occurs each year.

I came a little late, so am jumping in as the head of one of the most prestigious survey centers in the country, Dan Kasprzyk of NORC, weighs in on issues related to LGBT sampling. (He was just talking about a non-sampling error experience.) So, I’m going to focus more on the actual content now… but just wanted to start off by giving you a little bit of context to the meeting, because this is a really cool project.

Abstract of Center for Population Research in LGBT Health Project

Previous studies have shown that sexual and gender minorities have higher prevalence of life-threatening physical and mental health conditions, experience significant barriers to health care quality and access, and face substantial threats to quality of life. Population-based research is necessary to more fully understand the causes of these disparities, so that effective responses can be developed. The proposed project’s long-term objective is to create a sustainable capacity for population studies and the translation of results into practice models for sexual and gender minorities. This 5-year effort will be conducted by the Fenway Institute, supported by the Research and Evaluation Department of Fenway Community Health (FCH), a Federally-Qualified Community Health Center. FCH provides comprehensive primary health care and mental health services annually to 11,000 neighborhood residents and students in nearby colleges and to LGBT persons, primarily from Greater Boston. Approximately 55% of patients self-identify as LGBT, reporting sexual or gender minority behavior and/or identity. The project has the following specific aims to develop the infrastructure for population research regarding the health of sexual minorities: (1) develop and support a multidisciplinary faculty to advance the study of sexual and gender minority populations, (2) create a shared research library, to include selected population-based datasets and findings from a large clinical dataset, and (3) disseminate the products of our work through the internet, a monograph, and peer-reviewed journal articles.  A team of researchers with diverse qualifications has been assembled to address these specific aims, with the assistance of a National Advisory Board of experienced population scientists and technical experts. The input and collaborative work of these researchers will lead to a common framework for multidisciplinary scholarship that advances understanding of sexual minority populations and how social, cultural, and institutional factors influence their health. This work will provide a foundation for culturally competent treatment approaches and behavior change models for sexual minorities.