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.

What topics are missing from LGBT media?

Scoutby Scout
Director, Network for LGBT Health Equity
A project of The Fenway Institute in Boston, MA
Reporting from Netroots National LGBT Pre-Conf, Minneapolis MN

Bending our brains to see how we can use blogs for social change.

First, thanks hugely to Mike Rodgers for creating this LGBT pre-conference where the bloggers and some LGBT groups are tossed in a room together to really try to hone our strategies to create social change (or health change for us) via all these new online tools. The first session was a rapid fire speakout session about what topics were missing from our LGBT media blogosphere. Needless to say, I was up like a jackrabbit to say fast that HEALTH was missing! We’re tired of begging LGBT folk to care about issues like tobacco use, informing folk that tobacco is actually the number one health issue that takes years off of our lives. There are so many opportunities to really change health at the national and local level right now, help make all these big new prevention initiatives really include our communities. I know the steps to take to help make LGBT health inclusive can be pretty complicated sometimes (like, if you know what the big ACASI debate is about NHIS right now, you may be a very tiny club)… but we can really break these issues down into bite-sized pieces. The room was pretty receptive and a few bloggers already want to interview us about this issue. So, here’s crossing our fingers and hoping this could be an interesting step in getting more health topics covered in the LGBT media.

As I listen in to the blogger-driven side of the conversation, it becomes clear that many of these blogs that so many of us use for our LGBT information, are completely volunteer driven. Gotta say kudos to the many people who literally have taken on 2nd jobs on top of their regular ones to build these huge online media efforts. It’s an underrecognized group of heros who really deserve our support. So, start building those relationships with media folk, media is certainly a proven component of norm change. And when you build those relationships, remember these folks who can really help us blow up our messages and create health changes… are often struggling to keep afloat. Don’t just think of what you want, think of what you can offer as well.

Breaking News! NY Hospitals Announce Mandatory LGBT Cultural Competency Trainings

Scoutby Scout
Director, Network for LGBT Health Equity
A project of The Fenway Institute in Boston, MA
Reporting from Bellevue Hospital, NY

I’m down here in NYC and very, very happy to be at the press conference where New York City Health and Hospitals Corporation just announced mandatory LGBT cultural competency training for all their 37,000 employees! They also debuted the excellent new LGBT cultural competency video created by our friends at the The National LGBT Cancer Network. The Cancer Network created the full training to be administered to every NYC hospital employee, both the trainings and video are available for purchase or replication. (Don’t forget, the National LGBT Cancer Network is also our collaborator in our brand new LGBT Wellness NYC Marathon team.)

To have the head of all NY public hospitals reinforce that LGBT cultural competency trainings are a mandatory part of good healthcare is historic, let’s hope other cities and hospitals soon follow! See their press release here.

L to R: NYC Councilman Daniel Dromm; Liz Margolies, ED of National LGBT Cancer Network; NYC HHC President Alan D. Aviles, NYC Deputy Mayor Linda Gibbs, and HHC doctor.

Even HHS Secty Sebelius weighed in on what a big deal this is:

“I applaud the New York City Health and Hospitals Corporation for its leadership in ensuring LGBT patients are treated with the respect and dignity we all deserve. HHC has offered a path to a fairer America and HHS looks forward to seeing other efforts from care providers from around the country toward that same goal.”

We were also live-tweeting from the event with all play-by-play tweets on @lgbttobacco and @lgbthlthequity with some major help from friends on the ground @cathyrenna and @RennaComm, so check out updates there.

The video shown features the stories of several LGBT people who have experience bias in hospitals and in the healthcare system. You may have already seen an article about these trainings in Huffington Post, and an excerpt of the powerful video can be seen here:

Let’s hope the news spreads fast and other hospital systems follow suit.

See more press about this in:

  1. Advocate Magazine: NYC Hospitals Adopt LGBT Competence Training
  2. DNAinfo.com: New Hospital Program Addresses LGBT Health Woe
  3. New York Times Blog: For Public Hospital Employees, New Training on Gay Patients
  4. NY1: New Program Attempts To Eliminate Barriers For LGBT Patients
  5. Rainbow Access Initiative: Breaking News! NY Hospitals Announce Mandatory LGBT Cultural Competency Trainings
  6. University of Arkansas for Medical Science: Center for Diversity Affairs to Sponsor LGBT Cultural Competency Strategies Webinar

US Social Forum: Final Thoughts

Andrea Quijada, Executive Director, Media Literacy Project

As Media Literacy Project staff members begin to integrate our experiences and knowledge gained from the US Social Forum into our programs, we wanted to share with all of you some of the thoughts that will inform our work this coming year:

  • LGBTQI communities need access to media tools. However, media policies are being written as you read this blog, media policies that have huge implications for our daily lives. One example of such media policies has to do with the need for Net Neutrality—the need for a free Internet. Without Net Neutrality, queer health websites (like this one) could be blocked by Internet providers! We encourage all of you to join the Media Action Grassroots Network. Join us in telling the FCC that we need a free and open Internet.
  • Queer communities must address multiple oppressions in order to strengthen our movement. LGBTQI leadership, from the local to national level, must represent—both in presence and in analysis—the breadth of our communities. Our movement needs LGBTQI working-class, people of color, people with disabilities, and non-English speakers in leadership roles.
  • An increase of responsible speech in our media systems would have positive impacts on the queer community. We hope that all LGBTQI organizations join the National Hispanic Media Coalition in urging the FCC to conduct a report on the impact of hate speech on various oppressed communities. MLP strongly believes that journalists and news reporters must be responsible with their messages and with their framing of stories in order to increase understanding and accuracy in articles and programs.
  • The quality of our health impacts our abilities to tell our stories, and our stories must be heard.  Our stories are our histories, our culture, our identities, and our influence. In addition, healthy communities are a fundamental outcome of media justice.
  • Media must be defined broadly because media are rooted in culture. A dance, a song, a poem—each is a form of media. We must elevate forms of media that best speak to and reflect the communities we come from, are part of, and work in.

Interculturalism for Self-Determination

The 2010 United States Social Forum is officially over.  The Forum ended with the National People’s Movement Assembly (NMPA)—a chance for many of the groups that organized around specific movements throughout the week to move forward with the resolutions they came up with around their important issues.  I was struck by the resolution given by one group that touched on issues of U.S. territories and the U.S. relations with Latin America. I am interested and engaged in many issues that have to do with Latin America, not just because I am a 1st generation Chicano of immigrant parents, but because I realize the United States has a presence all over the world, in many ways through media.

National People's Movement Assembly

Toward the end of the NPMA I encountered the Beehive Collective, an organization that created a media area at the back of the venue.  Rooted in Eastern Maine, the Beehive calls themselves a decentralized swarm, their mission in a nutshell: To cross-pollinate the grassroots, by creating collaborative, anti-copyright images that can be used as educational and organizing tools. They create and teach visual narratives on posters and cloth that have to do with many issues in our hemisphere, including Latin America.  When I read the narrative graphic poster along with their pamphlets I felt like I was reading a graphic novel—I immediately found the things I often hear about in the media: drug wars, civil struggles, guerrillas.  Then, when I looked closer I saw many of the things I rarely see in the mainstream media—a multiplicity of diverse groups collectively struggling to dismantle the corruption of power violently affecting their way of life, their health, and their self-determination.

Beehive Collective Graphic Narrative: Plan Colombia

While there, fishing through graphics and reading up new projects they’ll be unveiling soon, I got to meet David Hernández Palmar, a filmmaker, and award-winning photographer from the Wayuu region, an indigenous community from the Venezuela/Colombia border area along the Carribean.  After telling him about my work on communication rights in New Mexico, I asked him to give me his experience with media in Latin America, specifically Venezuela where he lives and works.  He spoke to issues of inclusivity in media, the framing of stories through a western lens, but as well as the importance of asserting a community’s right to be included in issues of media policy.

On issues of inclusivity of the Wayuu culture in media, he spoke to me about the importance of making media for our own communities in the face of media that tends to criminalize and stereotype Latinos of African descent, and indigenous people.  In making media for our own communities, oppressed communities can fall into a trap of using a Western lens, of telling a story for an observer, and as an observer. David spoke about the need to make media as insiders, as participants—by us and for us. He explained that we need media for our benefit and acknowledged that some communities cannot share certain stories and traditions with the outside world.  He says there are different ways we interpret media, and that cannot always be looked at through a Western lens. He mentioned a story about how he was once told by an outsider that a film piece on the way of life of the Wayuu seemed to focus on something that “was good, but took too long”, he responded, “Well that’s the way it is, we’re a contemplative people.”

He discussed how interculturalidad (interculturalism) plays a role in making media inclusive. It made me reflect on how often privileged groups of people expect certain things to get done certain ways, and do not create space for the many ways and realities of the rest of us.  Really as a first-generation Chicano, I have to use certain methods of media to make a stand on certain issues affecting my community, and I also recognize that there are many different ways to use media and an array of media forms that stem from my own culture that need to be recognized and elevated.  I believe what my experience at the U.S. Social Forum has provided me is that I can participate as a media maker, and I have a story to tell. The Social Forum reminded me about the healing power of media, and my plan is to bring that inspiration back home to New Mexico.

Candelario Vazquez, Media Justice Organizer, Media Literacy Project

National People’s Movement Assembly

Karlos Gauna Schmieder with the Center for Media Justice reports back for the Media Action Grassroots Network's Media Justice PMA

More than 1,000 people attended the final People’s Movement Assembly, the National PMA, and reported back from the over 50 PMA’s held between Wednesday and Friday. Today, representatives from each assembly reported back the synthesized demands, commitments, and collective visions for moving forward. As each declaration was made, forum participants cheered for the visions they helped create. The demands made reflected the overall feeling towards the current status of social justice across the United States. These politically charged statements are the foundation for moving our collective visions forward using multiple strategies to ensure the greatest amount of successes.

The message that resonated most with me throughout this assembly was the overwhelming desire for folks to be in charge of the decisions that most impact and affect their ability to self-determine the quality and direction of their lives. Organizers across the country from broad and diverse backgrounds are asking for our struggles to be interwoven as a strategy to make each of our movements stronger. There were cries for divestment from the oppressive state of Israel, support for the people in Arizona resisting the racist laws that target people of color, and the urgency to reduce the havoc our precious earth must endure at the hand of capitalism.

The power to communicate belongs to all of us, equally. We must deepen our collaborative efforts to protect this right for each of us. This is the only way we will defeat the disaster that capitalism insists on leaving in its wake. Another world is beginning. Another world has begun.

thanks for reading,