Conference reflections: Challenges in Data Collection




E. Shor, MPH

WI Population Health Service Fellow at UW-Madison



Blogging from the LGBTI Health Research Conference


One of the sections today was entitled “LGBTI Health: Sexual Orientation, Gender Identity, and Intersex Data at Population and Clinical Levels,” and in this talk, four awesome presenters discussed a myriad of data collection triumphs and issues. Some of the triumphs I mentioned in an earlier post (example: starting to standardize a two-step method for collecting gender identity data), and some of the setbacks I mentioned earlier as well (need to strengthen data collection in intersex communities). I want to spend some time extrapolating on some of the points that Joanne Keatley of the Center of Excellence for Transgender Health discussed as challenges (many of these were mirrored in other discussions throughout the day as well).

Challenges in Data Collection

  • No population-based studies yet conducted: one of the large gaps in research in LGBTQI populations is the fact that we have very little longitudinal, population-based research to tell us about what happens throughout the lifecourse. As you can imagine following groups of people for long periods of time is an expensive endeavor that requires financial and institutional committment…and to make it even more complex in our communities, we have immense diversity in our communities making it difficult to define the population at times. When Joanne was talking about this, I found myself thinking about all the advocacy that has gone into adding questions about sexual orientation or gender identity to large-scale surveys, and whether this is the next frontier in research-advocacy…making sure that current longitudinal studies include measures that include LGBTQI communities AND advocating for funding to do population-based data collection.
  • Trans female centric and trans male invisibility in research: Joanne spent some time on the fact that much money for research in transgender and gender non-conforming populations has risen from HIV/AIDS research funding because trans feminine people have finally started to be counted in HIV data collection outside of the MSM category (big sigh)…so people really started paying attention to trans feminine folks when they realized they were at high risk of HIV, which as led to some trans masculine invisibility in both HIV data collection and in data collection overall. Now, it is very important to note that it is incredibly important to study trans feminine identified folks. I think the important take away message here was that it is important to name trans masculine invisibility in research and continue to work on this.
  • “Post-transsexual” identity and stealth existence: there is a whole host of people who have transgender lived experience and do not identify as transgender or live in a way that they try to keep their transgender status very much under the radar for many different reasons. This is a challenge in data collection because these folks often fall through cracks and are miscategorized in data collection and analysis, which means we are not getting a thorough picture of our communities in health data. The two-step method for collecting data on gender identity is a good way to identify folks who often fall through the cracks because it allows researchers to see the “sex assigned at birth” and “current gender identity,” which very much helps.

Clearly there are many other challenges in collecting data in LGBTQI communities, including stigma, both in community and in research around doing this type of work. I’m glad there are so many talented and smart researchers in the field to help blaze this trail and decrease the stigma in academia and in communities. I look forward to hearing from more of those folks tomorrow at the conference.

Putting the I in LGBTQI




E. Shor, MPH

Wisconsin Population Health Service Fellow through UW-Madison


Blogging Live from: the LGBTI Health Research Conference


This has been a jam-packed day so far and it is only half over at the LGBTI Health Research Conference. There have been speakers addressing data collection on sexual orientation and gender identity, addressing the necessity of doing more research around intersex identities, policy changes and implications of those changes, transgender health, history of research in LGBTQI communities, and so much more.  My brain feels full of things to think about.


Here a few things I thought were interesting:


  • From a historical perspective, Kellan Baker of the Center for American Progress, described a historical paradigm shift that has been happening in the lat 15 years. He mentioned that in the 2000s public health work highlighted health disparities, and in the 2010s the lens has shifted to health equity and health in all policies. This paradigm shift has really emphasized that equity is justice in the form of public policy and changing systems.


  • Thus far there have been a number of speakers highlighting experiences of groups who often face high levels of invisibility, including people who are intersex, and who are transgender. There have been great strides in methodology around collecting data in transgender and gender non-conforming communities. The two-step question method outlines questions to ascertain “sex at birth” and “current gender identity” to affirm a participants gender identity and create understanding about potential clinical needs and biological implications. However, it was very interesting to engage in dialogue about the fact that this two-step method may not be effective for people who are intersex, and that there is great need to build and test questions that capture intersex experiences and conditions.


  • Here are some thoughts on where to go and what we need to do to continue doing good work around LGBTQ health and research…


  • e.shor lgbt health con

E.Shor blogging from the LGBTI Health Research Conference



E. Shor, MPH

Wisconsin Population Health Service Fellow through UW-Madison

Blogging from the LGBTI Health Research Conference



Hello everyone,

It has been quite a while since I blogged here, so I wanted to quick re-introduce myself to the community. My name is E. Shor (most just call me Shor though) and I have been involved with the Network for a few years as a blogger and avid LGBTQ health nerd. I love following and being a part of the Network and infusing the things that I have learned while working, at home. Currently my work at home is through the University of Wisconsin Population Health Service Fellowship, a two year post-masters or post-doctoral fellowship meant to build public health leadership in the workforce. Most of my work and projects center on building capacity and knowledge around LGBTQ health. I work in communities that would benefit from needs assessments in trans* and gender non-conforming communities. I analyze existing data to highlight LGBTQ experiences. I work on local LGBTQ tobacco control community readiness. I do work force competency on LGBTQ health issues and cultural competency. You know…that type of stuff!  When I am not at work, I am riding my bike around, making jam and picking berries, playing with my kittens, doing pottery, traveling around and camping, and playing nerdy board games with my partner. 

Today was the opening evening of the LGBTI Health Research Conference in Cleveland, Ohio. It is lovely and green here! The conference opened with a lovely reception at Metro Health today, where the folks leading the way at Metro Health described some of the ways they are taking steps towards improving LGBT health access and how they are changing the climate here in Ohio. One of the first things they mentioned was the inclusion of partner benefits for employees of Metro Health as a concerted effort to demonstrate their commitment to all of their employees. They also highlighted medical providers and social support practitioners who have come together to create an LGBTQI working group to improve direct care to patients. All of the things I heard were wonderful notes to start the conversation about LGBTQI research and where the research agenda is headed in the future.

Social Media Rapid Response


  Guest Blogger

  Reporting from Netroots Nation in Providence, RI

This afternoon there were a few great sessions that I went to, one of which was on Rapid Response in the digital age. Rapid response is all about seeing your window of opportunity within the conversations happening around your issues, getting in on a conversation, or creating a new conversation QUICKLY and IN TIME with whatever is going on. The present gave us a run down of the ABCs for rapid response for social media advocacy:

  • A is for pay Attention
    • Keep your eyes open and your ears perked for news that is about you or news that impacts you…in fact, all day, every day was the presenter’s moto.
    • Check-in with your social media (Twitter, Facebook, news outlets, etc) often but stay on task
    • A good tool for this is Google Alerts because you can tell google to send you a message every time “The Network for LGBT Health Equity” comes up in any online news or media source
  • B is for Be ready 
    • Anticipate: don’t just wait for things to happen, try to stay ahead of the game by watching trends in your area and interest around you
    • Know your narrative and your message: once something happens that requires a rapid response make sure you know what your response is. Part of rapid response in social media is NOT having to run to and from your EDs office to ask what to say next…Also, it is important to advance a positive narrative and to redirect if necessary so that your response is promoting your message and your issues.
    • Save some ammunition: this means that if you have to respond to something unfriendly you have some tricks up your sleeve like pictures and written material ready to go. This doesn’t only go for unfriendly things and sometimes its ok to use some humor in tense places.
  • C is for  Close 
    • When trying to wind down from a rapid response situation take some time in closing off the conversation or situation…make sure you are saying what you need to say and aren’t typing nonsense.
    • Be thoughtful…at the end of the day we’re (well all of us associated with The Network anyway) trying to do something good using all these mediums of social media, so don’t be a jerk.

Our work and campaigns are not hinged on social media, but social media can certainly enhance our work and campaigns, because it gives out platforms an audience. Even if our goal is to get the US Census to collect better data on LGBTQ people, social media is a tool for conversations and to interject into other conversations. It’s pretty cool.


EXCLUSIVE: 10 Ways to Win the Internet Through Sexier Sharing and Epic Graphics


Guest Blogger

Reporting from Netroots Nation in Providence, Rhode Island


The title of this blog post embodies everything that the training was about…getting people’s attention as a way to promote your story, your call to action, your video…whatever…this is about getting clicks and and getting people to notice YOU.

So…y’all have issues, campaigns, videos, pictures, petitions and all these online tools to use to get people involved and aware of what you are doing, but with all the other folks out there doing similar online advocacy you are competing for air time. Here are some tips of how to get your stuff VISIBLE on the big interwebs…

  • Headlines and Titles are super important said these social media wizards from UpWorthy. Write loads of them, whether its for a video you are posting, an oped piece, or whatever…your headline needs to pop because most social media users only read the headline and the first couple sentences of any piece of media.
  • Lead sentences: If you are writing an oped or written media spend most of your time on the first TWO sentences. If you have not communicated the MOST IMPORTANT things in those two sentences most readers will not get the message.
  • Visuals are one of the best ways to get people involved in progressive issues.
    • Photos get 3-4x more engagement
    • Links on your photos to your content will get 10-30% increase in clicks
    • If you want to increase interaction with your materials…Facebook is King/Queer and you should use it.
  • Test your work: So you have some headlines or ideas, well see which one gets the most response from your viewers. Here are some ways to do this:
    • is a website that helps you count clicks on your URL. So if you post one of your hott headlines with your new video on Facebook you can use to see how  many people clicked on headline 1 in 15 minutes, headline 2 in 15 minutes and then you know which one resonates most with your audience.
    •  :  Same idea as
    • Google and Twitter Analytics: whoa a lot to learn hear. Check out Daniella’s Tweets from yesterday for more on this!
    • A/B Testing: Check out Scout’s post on this for more info!
    • Intuition: yes you should still use this in the digital age, because if your gut tells you that something stinks, it probably does.
  • Getting people to share things: so sharing is important to spread your good messages, but to do so you need to tap into something human in the online world…feelings. Most people share things and pass information when they feel angry or happy about something. So get your headline or title to illicit some of those feelings to get it to go viral.
The social media world moves fast, so get people to notice you. 
Over and out,

Social Media Strategy for Advocacy


Guest Blogger

Reporting from Netroots Nation in Providence, RI


Beth Becker and Alan Rosenblatt blasted us through an awesome session on Social Media Strategy and Advocacy yesterday eve. The room was packed and they packed in some of the nitty gritty about how to actually use social media for advocacy in an organization.

Here are some tips:

  • Use the Pyramid of Social Media Strategy when conceptualizing any social media campaign (reconstructed below for your viewing delights).
    • Targeted engagement: WHO are you trying to reach…there are too many people in the social media world to reach them all!
    • Authenticity: you should be able to relate with your audience…post things in your social media that are honest and real
    • Integration within the whole organization: YOU cannot do this alone…to launch a good and successful social media campaign your whole org must be on board with the same messaging and plan and actively participating!
    • Quality content: This is in the center for a reason…make it worth your reader’s time…make them want to be SOCIAL with your media and get involved with YOU.

  • Anatomy of a Tweet:
    • Include other tweeters in your post by using the @ symbol (example @SHIFTMinnesota). This is a good way to include people and to call people out or call them to action!
    • The # hastag is a way to create a conversation around a certain topic (example #nn12 is the hashtag for Netroots Nation, you can search it on twitter and see ALL the posts about the conference)! Hashtags are tool you can use to create a Twitter Townhall which is a forum for exploring a certain issue and has been used to gauge support, opposition and engagement in campaigns.
    • The LINK: you can link pictures, webpages, or anything really using Twitter…just paste your tiny URL right in there to redirect to a call to action!
  • Anatomy of a Facebook Post
    • There are THREE main things to keep in mind when posting on Facebook for your campaigns:
      • Lead Sentence: make it short and memorable
      • Image: FB is all about seeing things, draw people in with a palpable image
      • Call to Action: give people a way to follow up and to ENGAGE

Phew! So much to cover! One more quick thing that Beth said that…if you don’t have Pinterest, GET IT! Pinterest is a virtual push-pin board by subject that you share with your friends where you can post pictures, recipes, and other awesome stuff. Beth demoed a Pinterest Auction and a Pintition (get it? petition!).

Let me know if you have questions,


Netroots: What every nonprofit should know about the law & their social media presence


    Guest Blogger

    Reporting from Netroots Nation

Fascinating session this morning about Online Activism, Social Media and the Law this morning by Adam Bonin and Abby Levin who presented a host of interesting facts and figures for those of us who are using social media as a part of activism and advocacy particularly in 501(c)3 and 501(c)4 organizations.

Tips and things to watch out for from Online Activism, Social Media and the Law:

  • Whether blogging, tweeting, or facebooking, if you are at work you are at work. If you work for a 501(c)3 organization you need to be aware of who/what you follow on Twitter, who you like on Facebook, and what you blog about! You have to remain nonpartisan in all social media, not just on your website.
  • There is a lot of gray area in terms of the exact rules, regulations and laws coming from the IRS! Because so much of social media changes so fast, there are not always hard fast rules put forth by the IRS about how 501(c)3 and 501(4) are expected to use each piece of media out there. It is important to consult with legal consultants and experts on media about these things.

Wellstone Action! (from MN!) did a workshop on Grassroots Lobbying which I found applicable to all forms of organizing and advocacy work where you are trying to gain support for an initiative or policy.

Tips from Grassroots Lobbying about getting your message across:

  • Be prepared and know what you want to convey in concise fashion
  • Know your role! Whether in a meeting, blog or online forum, be strategic about how you convey your message and where you fit in the conversation.
  • If you are working on a policy initiative make your team effort fluid, highlight different perspectives, work from an agenda, have a precise ask and follow up.

So much more to share…I’ll save some for later.


Diving into Netroots Nation on the Heels of Philly Trans Health


blogger and queer health enthusiast

Netroots Nation, Providence, Rhode Island



Hay Network Hay,

Hope all is well with you. I am at Netroots Nation with many thanks to The Network for LGBT Health Equity for helping get me here. It was THEIR idea to nominate me for a scholarship through the DFA and to support me in getting here, and I am so grateful for this experience. In the shuttle to the hotel last night everyone was a buzz and coming here because “everyone you meet is so amazing” and “you learn so much about different ways of being in media.” So excited about those things!

I am also coming here on the heels of the Philadelphia Transgender Health Conference and I feel so whole knowing that I will have gotten to experience both of these conferences this week. I am so passionate about transgender and queer health, and the Trans Health Conference showed me a space that really validates transgender health unlike really any other I have see…EVER. There were so many people there hungry for information and knowledge, because there is so little, and one of the best parts for me as a public health practitioner is that there were many people offering information and best practices. Coupling these two conferences together is my dreamland because I also know that one way to gain visibility and to influence people is through media.

I am super excited to tell you more about what I learn about health communication, media, grassroots campaigns and so much more.

With energy,


Young Adult Tobacco-Control Promising Practices- Come and get ‘em!

by e.shor
Promising Practices Conference 
New Orleans, LA

Hay Network Hay!

This is e.shor writing from Promising Practices 2012 in New Orleans! What a treat to be at this conference in such a lively and fun city. This conference is all about working in communities and practices that have worked for tobacco control and public health folks in the field. There is a lot of good energy and sharing of knowledge here!

I coordinate a young-adult, LGBTQ tobacco-control campaign called SHIFT Minnesota. I am at this conference because SHIFT is trying to cover a lot of ground in our social media and policy work, and we are always looking to mentors and other tobacco-control experts for their wisdom and knowledge.

Some promising practices that I can offer are:

  • Listen to young people…they hold so much energy and knowledge and are the heart and soul of SHIFT.
  • Embrace color and BIG ideas! Part of tobacco-control is selling it as an important issue that people should care about…so add some pizzazz to your campaigns!
  • Pitch tobacco-control as a SOCIAL JUSTICE issue…people have heard since the 1970s that tobacco use is bad for their health. Tell them how the industry is targeting them to make a profit. Tell them that BIG TOBACCO is after young people. Make it personal.

I have so much left to learn about tobacco-control, but one final promising practice that I want to share with you all is: ENGAGE CURRENT TOBACCO USERS IN THE MOVEMENT. I have heard from so many people in LGBTQ communities that they don’t like tobacco control because they feel judged or that they are unwelcome in this movement because they are smokers. Welcoming current tobacco users with open arms into our work is so essential because they can be tobacco-control’s strongest allies. The CDC recently released the Tips from Former Smokers as way to highlight some experiences, I am excited to see the “Tips from Current Smokers” as a way to highlight the struggles of quitting and some of the challenges faced on that journey as well (note: “Tips from Current Smokers” is not a real campaign, just an idea!).

Hope you are well,


Breathe…Standing up against Corporate Tobacco

From Lucreshia with SHIFT Minnesota

When I think of the pain that is caused by corporate tobacco I think of my mother, who has smoked cigarettes for longer than I’ve been alive. I can remember so many times when she vowed to be quitting and she tried, had the gum and the patch for a while and now she has emphysema. I wept when she told me the diagnosis, made ocean puddles knowing that while my mother was losing her breath they would be gaining fortunes. She would squeeze out her last pennies for a pack and sigh with relief at her first morning’s puff; oh the addiction that they do and I would wonder how can anyone love something so smelling. The marriage has been a long thirty five years; the last phone conversation we had I told her it was time to leave; she can’t keep doing all the giving. Her breath to her last sense/cents enough is enough. I told her that even if dinner’s turkey is cold, she knows she can no longer follow it with a smoke. I stand up against corporate tobacco because I love my mother and she needs to breathe.