JOHN OEFFINGERDIRECTOR, ELEARNING AND TRAINING Last year, TransFORWARD: Improving Transgender Lives—a collaboration between Texas Health Institute and Equality Texas Foundation with Transgender Education Network of Texas—successfully completed its first Patient-Centered Outcomes Research Institute (PCORI) project! The goal was to connect transgender people with clinicians and researchers, ensuring medical care for transgender people is informed by evidence-based data. Key Findings We started work in November 2018 to create a clinical research collaborative. Meaningful engagement of patients and other stakeholders comes with challenges, as does any innovation in the research process. We found that engagement challenges are most often described in three domains: (1) infrastructure to support engagement, (2) building relationships, and (3) maintaining relationships. Key findings include:
We applied Project ECHO’s 3-part methodology to 18 topic sessions grouped in 3 series of 6-sessions each. The three series consisted of six sessions on mental health, housing, and employment. Fifty people attended one or more of the mental health sessions; 33 attended the housing sessions; and 22 attended the employment sessions.  Word cloud of medical research questions from 394 responses Outcomes Together, we successfully created a 28-person Research Engagement Advisory Council (REAC) to lead collaborative network development. The network spans all eight Texas regions, and trained 226 transgender people family members, clinicians, and researchers on terminology and projects to expand research capacity. REAC also includes a volunteer member and a staff person from Texas Medical Association, Texas Nurses Association, and Texas Hospital Association. We increased collaboration with The PRIDE Study through shared community engagement efforts. We were able to raise enrollments from 100 transgender and gender diverse enrollments to 381. In addition, we built a multi-sectoral network bringing together hospitals (children’s, public, nonprofit, Veterans Administration), clinics (LGBTQ+ health, AIDS Resource, Endocrinology), FQHCs, private practices (MDs, PAs, NPs), a county jail, and a clinic serving homeless transgender people. We also collected an email contact list of 300 people interested in PCORI research and proposal development. Expansion and Future PCORI further funded TransFORWARD for an add-on to study the impact of the COVID-19 pandemic on the transgender and gender-diverse communities. The Project ECHO COVID-19 Leadership Team of thirteen people included three transgender people and three cis people from the LGBQ+ community. The COVID-19 Enhancement enabled additional opportunities to bring in new stakeholders including elected officials or their staff. However, the pandemic also exposed stigma, discrimination, racial, and structured economic differences. We submitted two ancillary research studies to the PRIDE Study, which are now moving through the review process:
PCORI Work Continues
PCORI’s goal is to reduce the 17 years the Institute of Medicine describes as the time from a patient identifying a research topic to when evidence-based data is put into clinical practice. In addition to this first successful project, we started our second PCORI Engagement Award in October. Our colleagues at the UT Southwestern Medical Center lead a new PCORI Research Award on Suicide Intervention. Our colleagues at UT Dell Medical School lead a Merck Long-Acting PrEP clinical study. Together, we are building a transgender and gender diverse research collaborative in Texas. The collaborative is bridging into the larger LGBQ+ community with several new awards.
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JOHN OEFFINGERDIRECTOR, ELEARNING AND TRAINING November is Transgender Awareness Month, a time to celebrate and honor the trans (transgender and gender diverse) community and bring awareness to issues facing trans people. We interviewed several people involved with TransFORWARD: Texas Transgender Health, a collaboration between Texas Health Institute and Equality Texas Foundation, about barriers to health care for trans adults and how to improve the system for future generations. TransFORWARD aims to improve the lives of trans adults through research, evaluation, education, and dissemination of resources to foster growth in transgender health care and research. Emmett Schelling serves as the current executive director for Transgender Education Network of Texas (TENT), the statewide trans led and focused policy org in Texas. Madeleine Croll is pursuing a masters in political science while working as graduate teaching assistant and currently serves as vice president of GENTex, Gender Equality Network of Texas. Rocky Lane is a regional co-lead at TransFORWARD and a creative entrepreneur specializing in media and consulting services. Justine Price is completing her doctorate in health sciences and is a former deputy director of a local health department.  Why do you invest time in TF? Emmett | I’m trans, so I want to see trans health improve. I want to see it improve in Texas, the state with the second largest population of transgender adults. I believe we can not only affect the state, but the rest of the nation, in building a better, more inclusive and healthier world for all of us. The pandemic has opened our eyes, that the most vulnerable people are experiencing greater health concerns. Madeleine | TransFORWARD allows me to be a conduit for the community, the medical research community, and clinicians. It’s important for them to hear from us directly. I try to compile what the community tells me to say “This is our experience. Now that you are aware of it, what can we do to make it better?” We can understand different cultures and form the bonds we need to move forward. We must collaborate as equals because as much as we appreciate clinicians’ skills, they need to recognize the fact that we have our dignity. Rocky | I invest my time in TransFORWARD because people I trust invest their time in TransFORWARD: people that I have followed for a long time to understand how things work, how change happens, how advocacy can help build better partnerships to get us to the next level for our community. I was brought here by my mentor, Emmett Schelling from Trans Texas [Transgender Education Network of Texas]. I think Emmett thought because I used to be a health worker that I'd be a great member of this team. Justine | Because it's really important work for people. The thread that underlies all of the challenges in the transgender community is the unknown. It's a lack of understanding, of data points, of familiarity and being able to relate to people. We don't even really know how many people are trans, how many people identify and on which point of the spectrum. Biology is just starting to join hands with sociology and psychology to understand the spectrum of sex in the same way. A lot more needs to be done to understand the nuances of the transgender population and how we can best tailor treatment.  What are some of the barriers to care for trans people in Texas? Madeleine | A lot of our barriers [in the Rio Grande Valley] are economic. Our region has severe poverty, including the poorest U.S. county: Starr County. Labs are expensive; insurance is a major barrier. And many people are not competent to provide gender-affirming care, even basic medicine. I’ve heard of providers laughing at patients who “come out” to them. Some clinicians gleefully use their positions of power to render moral judgments against us. Accessibility and transportation are issues, and we are hyper-policed, so if you're undocumented, you're afraid to go out during the day. If you need advanced care, like gender affirmation surgery, there's no place to get it done. Do you go to Monterrey and take your chances trying to come back? And language becomes a barrier. Even within the Latinx community transgender is “transgénero” in Spanish, but across the river, the term is “transexual,” meaning I am taking the step to medically transition, which is a distinctive difference in Spanish. Rocky | The three buckets identified in our talks with the community were: navigation to affirming resources or clarity of what resources are; access based issues, like cost or access to more complex care; and cisgender people. A lot of the things that we hear from community directly result from cisgender people being a major barrier or the people that trans adults have to get through to get to their services. Justine | Again, I think it's the unknown. My primary care physician had a hard time understanding my estrogen therapy. She felt it was not safe to be on such a high dose of estrogen, because her medical knowledge was on using hormone replacement therapy for postmenopausal cis women. But that amount would have been ineffectual for trans women. Is our comfort level as a marginalized population such that we can honestly and openly talk about differences between trans people and cis people? I don't think that there's anything wrong or shameful in saying there's a difference. It comes on the basis of fact. If we don't talk about it, we're not going to be able to find the evidence and educate providers so that they even know what to look for or know to make the distinction. Emmett | First and foremost is the lack of knowledge, information, education. I think 50% of Texans said they had never even met a transgender person. Which, I giggled a little bit, because there's a very good chance you've met a transgender person and not realized it. The second thing is bias. When you don't know about people, then whatever bias or whatever you've been reading is going to play a part in your understanding or opinions or purview. Texas is a tough state to be trans in, with a limited pool of knowledgeable, informed, and educated health care professionals, and in rural areas, it could be a 3- to 6-hour drive for an appointment. Plus issues of employment and housing, the components along with health that foundationally set up people to be secure and successful. And then we get into other disparities that span across race, ethnicity, ability, and in health care, there is discrimination that can happen.  How do we change the system to ensure future generations don’t face these barriers?
Rocky | One solution is to build something specifically for ourselves and not try to adapt cis systems. So, build trans health care centers, for instance, to take over all training, research and treatments. We need to have community members be a liaison or ambassador, such as a patient navigator. The fact that we have cisgender doctors is not the issue, but that we don't have trans health care workers in any abundance. When I talk about cisgender people as a barrier, it's not something that cisgender people can solve or get out of without trans people. Trans adults want to talk to each other, to have access to each other. Dedicated centers could eliminate variable outcomes and also allow us to outline medical direction and accountability systems in a full regional level. Justine | First create an environment that's embracing, friendly, and inclusive of trans people so that we can hear from the people that these issues are affecting. Second, with those people as vital stakeholders at the table, continue to build that evidence base and shape projects by identifying priorities and needs, starting with the most critical working towards the ones that are less of an immediate impact on people's lives. And then, combining those two things, we continue to educate providers and build this as a cornerstone, just like any other aspect of medical training, into curricula, something that falls under that umbrella of general care pluralism. Emmett | Education is a big piece of any change: real permanence and a real shift that helps future generations. One of the things about TransFORWARD that I so appreciated is everyone participating is committed to learning from one another, our collaborative work, research, and different studies. We got honest feedback from the community that has not been heard from, the good, bad, ugly, everything in between. If we don't have that information, and we're not talking to researchers, providers, and community members, then we're not going to effect change for the next generation. We have so many trans adults in this nation that need care, and we need people that are educated and understand from every aspect how to help make them well and make sure they can have successful, happy, healthy lives. Madeleine | Protective legislation is always a good thing to strive for. It's not something, though, that I expect from my state. A lot of people here, if they have the privilege to do so, will go somewhere else that's more accepting. But a lot of us have talents and skills, and we deprive people of those skills and talents. So, the community has experienced that loss through geography just as much as suicide. We need to address education and the fact that there are queer people, queer families, and you share this state with us. We're not a threat to anybody's way of life. People are going to be themselves, regardless of whatever barriers you put. The only thing you're doing is criminalizing us and putting us in greater danger. Texas Health Institute (THI) announces that Chief Health Equity Officer Nadia Siddiqui will be stepping down from her role on October 29, 2021. After 12 years, she has made the decision to focus on her children in these unprecedented times, but will remain a close friend, ally, and advisor to our team.
“Nadia’s impact to health equity at the national, state, local and community levels cannot be overstated,” says Executive Director Ankit Sanghavi. “We are thankful for the strong foundation she has laid that will enable THI to expand our footprint on this path towards achieving health equity.” As Nadia marks her final week with us, we reflect on her journey, wisdom and the impact her work has had on health equity at all levels. The Start While equity is now a common rallying cry, it was not always a priority in health care and public health. Nadia started at THI as a senior analyst, working alongside Senior Research Scientist Dr. Dennis Andrulis, who brought his expertise in health disparities research to THI in 2010. In particular, their post-Hurricane Katrina work with the Office of Minority Health developed into guidance for integrating diversity and equity into public health preparedness and response. With the passing of the Affordable Care Act, Nadia contributed to over a dozen policy analyses and reports on the law’s opportunities and impact from a health equity lens. While expanding national partnerships for health equity, Nadia transitioned to Director of Health Equity Programs in 2014 and to THI’s inaugural Chief Health Equity Officer in 2020. Since 2015, THI has worked with the National Collaborative for Health Equity and the Virginia Commonwealth University on the groundbreaking Health Opportunity and Equity (HOPE) Initiative, including an interactive platform with equity data and benchmarks. We also partnered with United Health Foundation and America’s Health Rankings to produce the biennial Health of Those Who Have Served report on veterans’ health since 2016 and their inaugural Health Disparities Report in 2021. These and other national partnerships led by Nadia have allowed THI to become more creative, strategic and analytical, paving the way to further health equity work at every level. The Path While her journey started at the national level, Nadia was driven to bring that work to Texas. “Texas hasn’t done a great job of moving the needle on health,” she says. “We’ve fallen far behind on many measures, with deep and persistent inequities. Closing these longstanding gaps will require moving upstream, working across sectors and with communities to address the root causes of health inequities—including systemic racism and other forms of discrimination built into the fabric of our systems.” Bringing the work to Texas started with a major opportunity through the Robert Wood Johnson Foundation to understand how nearly two dozen cross-sector community initiatives across Texas work to advance health equity. In Southwest Houston, Nueces County, and other communities nationally, Nadia led efforts to offer new models for engaging communities to co-design and co-implement data initiatives to improve health and well-being. “Centering communities as the experts is at the heart of the work of health equity,” Nadia says. “Some of my most gratifying work at THI has been with communities, and while we have come a long way, I hope to see THI only further grow in its efforts to authentically engage communities for meaningful and sustained impact.” The Legacy “As a public health institute,” Nadia says, “We have the unique and unprecedented opportunity to be a leader in changing the narrative, changing lives, and having a true impact on equity. It starts with us as individuals, as an organization, and bringing other partners along on the journey.” With so much of public health driven by policy, philanthropy, and health care entities, she hopes THI can be a compass to bring alignment to the disparate initiatives across sectors in Texas. She and Executive Director Ankit Sanghavi have long championed the idea of a Texas Health Equity hub—a statewide network of regional and local cross-sector community health initiatives and leaders that align around a shared vision, metrics, and evidence-informed strategies for achieving health equity. Nadia also stressed the importance of advancing diversity, equity and inclusion internally. She emphasizes, “I have always wanted THI to walk the talk and become a leader by demonstrating equity principles and being an authentic partner to support other organizations on the same journey.” She helped centralize health equity in our strategic framework and launch initial pieces of an internal health equity assessment of our governance, structures, policies, and practices. “I am confident that THI will carry forward this work from infancy to adulthood and beyond.” THI is grateful for the legacy Nadia created through her dedication to advancing health equity at all levels. We remain deeply committed to the vision of health equity and are resolved to build on the foundation Nadia has laid and expand it further to drive meaningful change, improving the health of all. We are excited to expand our capacity through new dedicated health equity positions—including a nationwide search for a Chief Health Equity Officer—that we will be announcing in the coming days. We appreciate the incredible years that Nadia gave us and the people of Texas. We wish Nadia success and happiness with her family and in all her future endeavors. Thank you, Nadia, for your tireless leadership and dedication to health equity. STEPHANIE ONDRIASCHIEF CONVENING AND EDUCATION OFFICER Primary care, when prioritized in the health system, results in people living longer lives with more equitable outcomes. Texas Health Institute (THI), as the non-profit, non-partisan public health institute in the state, serves as a trusted, leading voice on public health and health care issues in Texas and the nation. Our expertise, strategies, and nimble approach make us, alongside the Texas Medical Home Initiative (TMHI), integral and essential partners in driving systems change efforts. THI and TMHI have joined forces in creating the Texas Primary Care Consortium (TPCC), with a mission to advance equitable, comprehensive, and sustainable primary care for all Texans.
Primary care is the foundation of a strong and effective health care system. Abundant data shows that people in communities with more primary care practitioners—measured in proportion to the population of the county or city—are overall healthier and live longer. Research has proven the fundamental role of primary care in improved chronic disease management, providing preventive care, ensuring patient engagement, leading care coordination, and delivering person-centered care. Yet, our current healthcare system consistently falls short for everyone involved. Inequities, high costs, lack of access, and disparities in care and quality lead to frustration and sub-optimal outcomes for not only patients and providers, but communities, businesses, payers, government, and policymakers alike. This is especially true in Texas, where the large number of rural counties, growing health professional shortage, and high rates of uninsured or underinsured residents make access to primary care services difficult. Subsequently, care is frequently obtained later in the course of an illness at higher-cost venues such as emergency departments. Together, these factors are contributing to a growing health care crisis in Texas. As we highlight National Primary Care Week, TPCC continues to focus on advancing primary care through its framework: educate, activate, and transform.
TPCC’s activities include:
To learn more, register for our upcoming convenings, or join the state’s only multisectoral network focused on primary care in Texas, visit our website: txprimarycareconsortium.org The Immunization Partnership Staff
August is National Immunization Awareness Month and we are featuring a guest blog from The Immunization Partnership, who distributes resources to promote adult and child vaccinations across the state. Read more below to learn about their efforts and recommendations. As the state’s public health institute, we prioritize sharing both internal and external information that contributes to advancing the health of all. August provides The Immunization Partnership the opportunity to reach out to parents and the public in general about the importance of keeping current on adult and children vaccines. By combining social media and traditional media messaging for National Immunization Awareness Month and Back to School, we can reach out to Texans in a variety of ways. We made available to Texas county health districts and public health agencies a NIAM and Back to School proclamation template, which allows customization by inserting the name and title of the proclamation issuer, such as mayor or county judge. We also will provide targeted news releases about NIAM and Back to School, which include quotes from the local public health professional and our interim Executive Director. The local public health person can revise or extend the quote. We use the main news release, which includes only quotes from our interim Executive Director, for the rest of the state. We are proud to announce the distribution of a series of English/Spanish animated videos we hope will answer COVID-19 vaccination questions and lead to more Texans exercising their right to bare arms and take a shot for Texas. Americagroup Texas funded the project, which The Immunization Partnership produced.
Misinformation, or simply the lack of information, regarding COVID-19 and the authorized vaccines has led to confusion and hesitancy. Hill Powell, our interim Executive Director, is excited about the role these videos can play in reducing the number of COVID-19 cases throughout Texas because they bring the right message at the right time. “The best way to counter relatively common misperceptions and misinformation, such as the belief that vaccines might change a person’s DNA, is through basic information about the vaccines and how they work. And these videos do just that.”
Katy Gore, our Coalitions and Education Program Manager, designed the videos that run about a minute or less. They not only explain the virus and the vaccines in a format we hope will dispel doubts but they also give doctors, nurses, and health professionals an opportunity to answer patients’ questions and concerns about the vaccines. “We want to create comfort with the vaccine among individual Texans, families, and communities,” Katy says. The videos will run on a loop in the lobbies of Federally Qualified Health Clinics and in reception areas of Texas Community Health Centers members. Coastal Health and Wellness clinics in Galveston County are the first FQHCs to run the videos. We also will share them on social media and with other clinic systems across the state. We have the videos on our COVID-19 webpage. Contact Katy at kgore@immunizeusa.org if your organization would like the videos. They’re free! |
