Understanding Sexual Orientation and Gender Identity Data Collection in Oncology With Mandi Pratt-Chapman, PhD

Oncology Data Advisor: Welcome to Oncology Data Advisor. Today, we're here at the ASCO Annual Meeting, and I'm joined by Mandy Pratt-Chapman. Thanks so much for coming on today.

Mandi Pratt-Chapman, PhD: Absolutely.

Oncology Data Advisor: Would you like to introduce yourself and share a little bit about what your work and your research focus on?

Dr. Pratt-Chapman: I am an Associate Professor of Medicine at the George Washington University Cancer Center and School of Medicine. I am Associate Center Director for Community Outreach, Engagement, and Equity for the Cancer Center. I'm part of the executive leadership team there. My research has really been focused on patient-centered care and health equity since the beginning of my research career, and in the last seven years or so, I've increasingly focused on the LGBTQIA+ population.

Oncology Data Advisor: You have a study here on key difference-making conditions distinguishing ASCO members' institutions that collect sexual orientation and gender identity data from those who do not. For background, what is SOGI data, and why is it important to collect?

Dr. Pratt-Chapman: Yes, SOGI data is sexual orientation and gender identity data, and it usually consists of at least three questions—sex assigned at birth, gender identity, and sexual orientation. I'm actually working with a National Cancer Institute (NCI) Data Standards Working Group on refining what kinds of questions to ask and what are the gold standard right now versus what's optional. There could be more questions that get at sexual orientation and gender identity data.

And why is it important? It's important because without asking about sexual orientation, gender identity, and sexual behaviors, then we're missing the boat on providing clinical care appropriately to patients. We're also not able to measure differences in care and differences in outcomes. Historically, we haven't collected these data, so we have very limited evidence to guide clinical care decision making and clinical guidelines. If we can normalize and standardize the collection of these data, we'll be that much further ahead in terms of building an evidence base and being able to identify what works best for specific populations to guide clinical care in the future.

Oncology Data Advisor: Great. What was your goal for this study, and how did you go about designing and conducting it?

Dr. Pratt-Chapman: My goal for this study is based on the fact that as an implementation scientist, I'm interested in how things really happen in practice. We had a prior phase of this study. I was working with a number of colleagues, and we did a survey asking about factors associated with SOGI data collection. What we found was through the survey was that leadership support, resources, and having an understanding of why SOGI data makes a difference were the factors most statistically associated with actual data collection.

But then when we looked back at that data, I thought to myself, "Well, what does leadership support actually mean? What do resources actually mean, and what makes it happen? What's the difference between a place that understands the importance and relevance of these data from a place that doesn't?" I wanted to do a deeper dive and do a qualitative analysis of difference makers.

The reason that I call them difference makers is because we're using a different kind of mixed methods approach where we're doing qualitative data analysis for thematic analysis, but we're also doing coincidence analysis, which is Boolean-driven configurational analysis rather than regression. The idea is that you may have A, B, and C that lead to D, and then you may have E and F that also lead to D. It's being able to pull out the combinations of factors in a particular complex setting that might lead to the outcome of interest, which for us is the collection and use of these data. So, I designed it because I really wanted to do a Boolean logic, coincidence-based analysis, but I primarily wanted to do the qualitative work of digging in and finding out what was behind the answers to some of the survey questions that we didn't really understand.

Oncology Data Advisor: What were some of the themes that the survey uncovered?

Dr. Pratt-Chapman: In our qualitative analysis, we're still collecting data. We've done about 60 interviews. We have another six or so to go, and then we're digging into some data analysis. But anecdotally—this is kind of preliminary—we have found that leadership support is critical. State mandates or organizational mandates can be very helpful. In the analysis that we presented for this meeting here, we did a configurational analysis of the survey items, and it was very complimentary with the regression-based analysis with the leadership support and resources ranked as difference makers.

The other thing that was interesting was that asking about pronouns was a difference maker. I think that signifies that if you understand why these data are important, you're more likely to be asking that question. In terms of directionality, we can't make any assumptions in terms of direction, but with this qualitative work, I'm hoping to uncover a little bit more behind workflow, who the leaders are who are supporting these things, and how these data can become a priority in clinical practice.

I think it does happen in a couple of ways. It can either be easily embedded in the workflow in a way that's so simple that it's not disruptive or really that new for clinicians. And that can come from pushing out things through a patient portal or a standardized data collection instrument that is self-reported. Then I think the institutions that I'm seeing do it the best have invested resources so that people are trained to collect these data. There's patient education, there's provider education, there's a workflow component, and they're thinking about those contextual factors to make it a seamless part of clinical practice.

Oncology Data Advisor: Great, that's really important research. Do you have any additional advice for how institutions can begin collecting so SOGI data or how they can improve the collection of it?

Dr. Pratt-Chapman: Yes, I think you just have to start. I'm always a proponent of not letting the perfect be the enemy of the good. I think you just have to start and learn. We're going to make mistakes and we're going to mess up, because anytime we're doing something new—particularly when we're trying to provide better care for a population that's been historically invisible—we're going to run into bumps, and we're going to run into challenges. There are going to be some things that are not perfect.

But I think that one of the things we have going for us is that with meaningful use, pretty much every electronic health record (EHR) has to have a place where these items are structured. If you're not collecting these data, I guarantee there's a place in the EHR where you could, and it may just be a matter of turning that module on. That's one quick thing, making sure that you have a place to document and know where to put the information.

Then in terms of asking, depending on the culture, it can take a variety of forms. I think that there are going to be differences in terms of patient ability or willingness to report based on geopolitical realities, because we've seen a lot of anti-LGBT legislation and pushback this year. I think it's really important to give people the option of disclosing but not requiring it—making it available in patient portals, on intake forms, in organic history-taking with patients, and then just being open to hearing the answers that you get and not making assumptions.

Oncology Data Advisor: Yes, absolutely. My final question for you is, since the theme of ASCO this year is "Partnering with Patients," how does this research help work towards that goal?