The For Your Health News Podcast explores the issues shaping health and healthcare in communities across the United States. Through conversations with experts, advocates, researchers, policymakers, and community leaders, the podcast breaks down complex health topics, examines barriers to health access, and shares evidence-based insights and solutions that put people first.
In this episode of the For Your Health News Podcast, Courtney Lang, JD, Founder and Principal of Langco + Partners, discusses data equity and why more representative data is essential to understanding and addressing gaps across the healthcare system.
Courtney explores some of the causes of data inequity and discusses collaborative efforts to improve representation in data collection across government and the private sector.
The conversation also highlights the Data Equity Coalition, a collaborative effort focused on strengthening data standards and ensuring that communities are more accurately represented in health data. The Coalition works to advance standards related to race, ethnicity, language, sexual orientation, and gender identity in support of better health outcomes.
Courtney also discusses the importance of identification within data, collective advocacy, and the resources available to support a broader movement toward more representative health information and improved health access.
In This Episode, You’ll Learn: • What data equity means and why it matters • Some of the factors that contribute to data inequity • Why representation in health data is important • What the Data Equity Coalition is working to accomplish • How collaboration across government and the private sector can improve data practices • Why better identification and data standards can support better health outcomes • Where advocates can find resources related to the data equity movement
Learn more about the Data Equity Coalition: dataequitycoalition.com
Learn more about the National Minority Quality Forum: nmqf.org
Read more health news: fyh.news
SPEAKER_00
For your health news podcast, we have a data equity champion in the building. Yes. We have Courtney Lane. And so excited to dive into why data equity is important. And then hear some of the work that you've been leading. So tell us a little bit more about some of the work you're working on.
SPEAKER_01
Thank you. Delighted to be here with you. So data equity is the foundation for health equity. And when we speak of data equity, what we are advancing is RHEL and SOGI data. RHEL, race, ethnicity, language, and SOGI, sexual orientation, and gender identification as foundational principles to making sure that we hold the truth to the health equity movement.
SPEAKER_00
Wow, that's a mouthful.
SPEAKER_01
It is. It is.
SPEAKER_00
So for folks who are just like, well, that sounds like an acronym that doesn't have anything to do with me. How would you explain to them why this is incredibly important when thinking about patient care, then specifically also cancer care?
SPEAKER_01
Absolutely. So a lot of times we try to divorce race and ethnicity from the patient care journey, but we cannot. Just like we absolutely cannot divorce language and someone's gender and sexual orientation status. All of these factors really make a tremendous difference in terms of outcomes. And so today we're celebrating what we can achieve with solutions to the cancer care continuum, but how we navigate the cancer system of care completely is dependent on the data that defines how race and ethnicity is viewed within the broader ecosystem of healthcare.
SPEAKER_00
And when we talk about data, why is there data inequities? Do you find that it's people are not interested in giving their data? They have been inequitable collection systems. Let's talk about the root causes of data inequity a little.
SPEAKER_01
It's all of that, right? It's the lack of standardization in data. It's the lack of understanding why data reporting is so critical to our survival. It's the lack of understanding the importance of data diversity, the different subsets, that's how the numbers really play out. But I'll tell you, when it comes to the funding, we're always at a disadvantage with medically underserved communities when data is not prioritized and we're overlooked within the cancer system, within the healthcare system. We need to make sure that we're forcing institutions to be accountable to us, to make sure that we're represented in the numbers. If we're not represented, we're not going to get the care that we need.
SPEAKER_00
For sure. And the initiatives that you're leading that are forcing this accountability, what does that actually look like?
SPEAKER_01
Sure. Well, we have a data equity coalition and honored to help to convene a coalition of roughly about 20 to 25 stakeholders that are meeting every other month to really serve as champions for advocacy for data equity. National Minority Quality Forum. Shout out to them. The shout out to them is leading the way in collaboration with Blue Cross Blue Shield Association and a cadre of patient provider health system advocates to really prioritize Statistical Policy Directive number 15 that was delivered by the Office of Management and Budget, which has not been updated in 30 years.
SPEAKER_00
30 years.
SPEAKER_01
The world has changed so much in the landscape has changed. How everything has changed. So the work that we've been doing over the last year has been to answer the call, the necessary call, to really make sure that there is representation in all levels of federal government, and not just the government, but in the private sector too, because we're trying to change the landscape so that we can all participate in the system of care equitably, that there's fairness, that there's justice, that there's trust.
SPEAKER_00
Do you find that there's a lot of headwinds against this work, or do you find that there are stakeholders who say, I want to tap in, I want to get involved?
SPEAKER_01
Well, I think there's a lot of energy in equity. So stakeholders want to be a part of the broader equity movement. What does that mean in healthcare? But there's not as much understanding on the data side. So we need to really have data equity advocates to get visibility so that the numbers support the science and the science supports the cures. And at the end of the day, what we're trying to do is to really make sure that patients get the cures, the research, the treatment options that they rightfully deserve, and that the resources and the funding are there to support it.
SPEAKER_00
It's almost um what you're saying is very necessary now because I do find that there people hear the terms data and they're like, I don't know what that has to do with me. But that's why we're creating this podcast, is that we want people to understand that it's simple, right? What does that look like? How does it show up in my life? It's actually very simple. What are some of the ways that people can create a better world that has more data equity in it? What are those some of those simple things practitioners can do, patients can do, and even everyday people to make sure that data equity is top of mind for them?
SPEAKER_01
Always be willing to check the box. Don't be afraid of identification of data. And being intentional, Dr. Puckran has been using the word intentionality with a lot of the advocacy work that National Minority Quality Forum is doing. And that's what we're asking patients and providers to do as well. Be intentional about your selection, about your representation. And in addition to that, be intentional about your navigation. There are three fundamental questions that I always challenge the patients to ask the system of care that they find themselves in. Who do I call? What do I do? And where do I go?
SPEAKER_00
Yeah. Who do I call? What do I do?
SPEAKER_01
Where do I go? There it is. Amen. And if you can answer those three questions, then we have solved the navigation deficit. And so the work that I do in support of the data equity movement is to really challenge the patients, providers, the systems of care, because it takes all of us to put pressure on the system to make sure that we're good advocates for ourselves. At the end of the day, we all have a story. So navigating the healthcare system, whether it's an oncology diagnosis or another chronic disease, it's all about how we relate to the system. But if we don't know what to do first, we can't get to the success.
SPEAKER_00
That's true. I like how you said don't be afraid to check the box. Because I think there's a lot of hesitation. What are they going to use this data for? Is it something that's going to be used well? Is going to be used against me in the future? People are scared to check the box. And I think it's historically in some communities that have felt as though checking the box would be against them somehow. Um, they just have felt a lot of hesitation around this. So it's important work for sure. How can people find more information about the data equity movement and what are ways to get in touch if they want to be like you an advocate to make sure that this is top of mind for our elected officials and for everyone else?
SPEAKER_01
Sure. So there are two really important resources. One is DataEquity Coalition.com. Real simple. So there it is. Tap it in equity, tap it in, search it. We have a lot of resources that are posted by a lot of the different stakeholders that are part of the movement. And then I run a health justice and health equity public affairs firm, Langco Partners. And you can reach out to me directly, and I will make sure that you are included in the efforts that we're doing around data equity, health equity, and patient care navigation.
SPEAKER_00
Love it. Thank you so much for making the time to be on the podcast today. It's an honor. Yay! Thank you.
