Patients & Providers: Gender in Research Surveys

Michelle Litchman is a nurse who changed the way research questions around gender are phrased in surveys. She started by asking her target audience on Twitter: How can we be more inclusive?


Check the Box: Gender in Research Surveys

by Michelle Litchman

 

I’ve had the pleasure of working in an endocrinology/diabetes setting for the past 11 years. In my practice I have been acutely aware of the social justice issues surrounding trans individuals.

One day, I overheard one of my colleagues speaking out about her refusal to treat a trans patient. While this provider did the right thing in referring the patient to someone who would treat the patient, it made me realize how difficult receiving basic health care as a trans patient can be.

Fast forward to the Stanford Medicine X conference several years later, one of the speakers challenged the audience to identify how gender was being addressed within our own healthcare system. I committed to looking into this.

The answer? Paper forms only had Male/Female options while the electronic medical record had boxes for male, female, and transgender – with no ability for the patient to select their own option. Our EMR seemed to be better than some, but definitely not good enough.

My employer offered a training for faculty to become more understanding of LGBTQ students. I became more familiar with the use of pronouns – she/her/hers; he/him/his; and they/them/theirs. I was intrigued when I saw this reinforced when a colleague I admire used this in her signature line:

I also became aware of challenges that trans individuals face, which require additional research to resolve. For example, what are the breast cancer rates among males who transition to female? And should the treatment be the same? These questions clearly indicate the need for more inclusive research.

My colleague, Kristin Cloyes, PhD, RN stated it perfectly in the American Journal of Nursing publication titled LGBT Older Adults in Long Term Care, “even for researchers who don’t work specifically with LGBT people, if you’re studying cancer, heart disease, or obesity, you are working with people in the LGBT community.”

Towards Inclusive Health Research

Health researchers are challenged with various concerns when approaching research: Will I be able to recruit? Will I be able to keep participants engaged throughout the study to avoid drop out? Is the intervention clear? Will participants benefit?

With focus on the approach and procedural aspects of conducting research, the demographics section may get overlooked. Survey software that allows for templates may result in a research team using the same demographic template from one research study to the next. If inclusive language is not included in the gender section, it may be continually missed.

People who take surveys tend to check out after 18 minutes or so. Because of this, researchers have to be mindful of how many questions we are asking. Often times, surveys will force participants to fit their answer inside a literal (check) box. While there may more than one option to select, it still might not be an accurate reflection of the person.

Race is a good example of this. We live in a world where people aren’t just American Indian/Alaska Native, Asian, Black, Native Hawaiian/Pacific Islander or White. And what if you are half Hispanic and half white? How do you answer an ethnicity question where the options are only Hispanic/Latino or Not Hispanic/Latino?

Many of us are more than one answer. When we are forced to select only one option, which do we pick? This has been my challenge throughout my life, do I pick Asian? White? This has always left me with the feeling, ‘Why isn’t there an option for both?’

I decided to seek ways to make my research more inclusive. If I don’t want to be forced into a race box that doesn’t really describe who I am, why should I force someone into a gender box when it may not accurately describe them?

In developing the demographics section of my research, I was fortunate to be able to reach out to others via Twitter and email to ask questions. Using this information, I changed the demographic template I had been using to one that was more inclusive.

See One, Do One, Teach One

In healthcare training, we are taught to see one, do one, then teach one. While this typically relates to a medical procedure, it can relate to research concepts as well.

After I became more confident in the types of gender questions I was asking in my own research, I sought to help others be more inclusive in their research. I have peer reviewed questions for large national surveys and smaller surveys directed towards a specific population. Some listed male/female only. Some listed male/female/other. Never was there more than one question asked regarding gender. When providing feedback (on gender and race), everyone thus far has been receptive to changing their options to be more inclusive.

While I would never claim to be an expert in health challenges that trans individuals face, I am committed to supporting more inclusive research. If researchers fail to be more inclusive, we fail to advance healthcare for trans individuals.


About Michelle Litchman

Michelle Litchman, PhD, FNP-BC, FAANP is an Assistant Professor at the University of Utah College of Nursing and nurse practitioner at the Utah Diabetes and Endocrinology Center. She is involved with research, teaching, and clinical care. She is passionate about education and teaches students in the clinical and classroom settings. You can follow her on Twitter @MichLitch.


About Patients & Providers

This series brings together both trans patients and providers as experts of their experience, inviting us all to learn about each other’s real needs while we wait for the medical literature and best practices to catch up. If you’re a provider or a patient and wish to contribute, let us know!

Community Voices

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s