Advancing Health Equity With the Mount Sinai Million Health Discoveries Program

Alexander Charney, MD, PhD

An essential part of achieving health equity is the fair collection of genomic data, ensuring that informed health care decisions can reflect the unique, diverse genomes of all cultures. Currently, there is a lack of diversity in genomic research data. This limits what we can uncover about health and potential treatments for our global population.

Expanding diversity among participants in genomic research can bridge these gaps, advancing our understanding of human genetics for all communities. One ambitious initiative that strives to diversify this data is the Mount Sinai Million Health Discoveries Program.

Mount Sinai Health System’s Health Equity Data Assessment (HEDA) team met with leaders of the program who expressed their challenge with identifying the ethnic identities of Mount Sinai patients participating in the program. HEDA was quickly able to assist in rectifying the data issue, which resulted in increasing the ethnic identities from 0.5 percent to 66 percent.

This assistance will have a significant impact on the program objectives. A hypothesis was formulated in the Measures and Outcomes section of the HEDA Hub. The HEDA team will track progress towards the program’s goal of reaching a million patients.

The Charles Bronfman Institute for Personalized Medicine at the Icahn School of Medicine at Mount Sinai leads this project and aims to sequence the genomes of one million Mount Sinai patients over the next five years. It seeks to integrate health and research data to drive discoveries that directly benefit a diverse patient population.

Lea K. Davis, PhD

Mount Sinai Million is poised to serve as a model for embedding genetics into routine clinical care. By leveraging data from one of the world’s most diverse patient populations within a massive New York City health system, this program seeks to deepen our understanding of the connections between genetics and disease.

In a recent conversation with Alexander Charney, MD, PhD, Director, The Charles Bronfman Institute for Personalized Medicine, and Associate Professor, Genetics and Genomic Sciences, Psychiatry, Neuroscience, Neurosurgery, and Artificial Intelligence and Human Health, Icahn Mount Sinai; and Lea K. Davis, PhD, Scientific Director of the Mount Sinai Million Health Discoveries Program, The Charles Bronfman Institute for Personalized Medicine, and Associate Professor of Medicine (Data-Driven and Digital Medicine), Icahn Mount Sinai, we gained further insight into this initiative.

Dr. Charney explains: “Our goal is to develop personalized treatments tailored not only to the disease but to the individual’s genetic makeup, which we know varies significantly across populations.”

“Equity is a core value of the scientific vision for the Mount Sinai Million,” says Dr. Davis. “We are thrilled to connect the program with HEDA and are looking forward to supporting equity-focused research through the development of this incredible resource.”

Reflecting on the broader impact, Dr. Charney says the initiative “isn’t just about collecting data; it’s about improving lives.” He envisions a health care system where genetic insights enable clinicians to make more informed, individualized decisions.

“With this kind of data,” he says, “we’re not just diagnosing based on symptoms—we’re diagnosing based on a person’s unique genetic and biological profile, which could mean a huge leap in effectiveness.”

With this forward-thinking approach, Dr. Charney and the Mount Sinai team are working toward a future where each person’s treatment is precise, effective, and, above all, personalized.

To enroll as a participant or to learn more about the Mount Sinai Million Health Discoveries Program, visit mountsinaimillion.org.

Advancing Health Equity at the ISQua 2024 Conference

The Mount Sinai Health System’s Health Equity Data Assessment (HEDA) team made significant strides at the International Society for Quality in Health Care Conference in Istanbul,Turkey.

Those attending included HEDA members Pamela Abner, MPA, CPXP, Senior Vice President and Health Equity Officer, the Mount Sinai Health System; Lyndia Hayden, MS, PMP, Senior Director of Data Integrity and Equity Analytics; and Doran Ricks, MS, RN, MBA, Vice President of Data Quality and Stewardship.

The conference theme was “Health for People and Planet: Building Bridges to a Sustainable Future,” focusing on enhancing health care quality and safety worldwide.

“Attending the ISQua conference was a wonderful opportunity to hear about experiences from experts and colleagues around the world and share strategies for improving health access and outcomes,” said Mr. Ricks. “Many of the challenges we face in health care are common, even across international borders. It is key that we take the time to learn from the experiences of others.”

The HEDA team showcased their work, titled “Unleashing the Power of Data for Health Equity: A Blueprint for Elevating Quality and Patient Safety,” and presented a poster titled “Providing an Equity Lens on Quality Metrics: Evaluation of ‘Left Without Being Seen’ in the Emergency Department,” which emphasized the critical need to evaluate patients who leave the emergency department without being seen.

Throughout the conference, the team collaborated with fellow health care professionals, sharing insights on advancing health equity and committing to bring valuable findings back to the community.

“I was surprised to learn how much we have in common with other nations who struggle to address health equity. It was a most rewarding experience and exchange of ideas, and an opportunity for future collaboration,” said Ms. Abner.

As the HEDA team wrapped up their participation in the conference, they expressed gratitude for the opportunity to contribute to the global discourse on health equity and quality improvement.

“The conference served as an invaluable platform for the HEDA team to share insights, foster collaboration, and advocate for advancing health equity on a global scale,” said Ms. Abner.

Advancing Health Equity With Data: Improving Patient Care in the Emergency Department

At Mount Sinai, active collaboration with department stakeholders drives the efforts of the Health Equity Data Assessment (HEDA) team to advance health equity through data-driven initiatives.

Yvette Calderon, MD

Yvette Calderon, MD, Vice President and Dean for Equity in Clinical Care at the Icahn School of Medicine at Mount Sinai, recently discussed how the Emergency Department (ED) partnered with the HEDA team to apply an equity lens to evaluate Left Without Being Seen (LWBS) patients.

Together, they are reviewing data integrity in emergency medical records and applying an equity lens to effect meaningful change.

“This commitment underscores Mount Sinai’s ongoing dedication to fostering health equity through collaborative, data-informed strategies,” said Pamela Y. Abner, MPA, CPXP, Senior Vice President and Health Equity Officer for the Mount Sinai Health System.

LWBS is defined as a patient leaving the ED before completing a medical screening exam. When this metric is not met, it can represent quality and safety concerns, according to Lyndia Hayden, Senior Director, Data Integrity and Equity Analytics.

LWBS patients may also have an undiagnosed medical condition and may experience undesirable health outcomes outside of the hospital. Hospitals can also face penalties if they fail to meet certain quality metrics, like LWBS. The Centers for Medicare & Medicaid Services can reduce reimbursement rates for hospitals that do not meet these standards, having a direct impact on the hospital revenue stream.

On average, non-white patients tend to have a disproportionally higher rate of LWBS than white patients. As such, LWBS must be examined through an equity lens to ensure optimal patient outcomes for all patients.

Dr. Calderon emphasized the critical role of data integrity as a foundational step before delving into metrics analysis. With invaluable support from the HEAD Hub, the Department of Emergency Medicine at Icahn Mount Sinai implemented a comprehensive dashboard system, empowering ED service lines across the Mount Sinai Health System to closely monitor performance indicators, identify key drivers, and establish clear accountability measures.

For example, guided by these insights, each ED tailored interventions to their unique context, with initiatives such as Provider-in-Triage (PIT) protocols, mandatory unconscious bias training, and enhanced education for registration staff on demographic data collection emerging as effective strategies at Mount Sinai Beth Israel.

This work was presented to the Joint Commission during the Mount Sinai Downtown survey. It impressed the surveyors to see that Mount Sinai had already started integrating the new standard from the Joint Commission.

“The data integrity piece had to happen first before we could look at any of the metrics,” said Dr. Calderon. “Through diligent implementation, these interventions have proven instrumental in addressing pertinent issues within the emergency departments that identified a need.”

Why It’s Important for AAPI Communities to Be Vigilant About Breast and Colon Cancer Screening

As the country celebrates the cultural diversity of Asian Americans, Native Hawaiians, and Pacific Islanders in May for Asian/Pacific American Heritage Month, it is time for a reminder for members of those communities to keep up with their cancer screenings. Specifically, experts at the Mount Sinai Health System are calling on Asian American and Pacific Islander (AAPI) people to be vigilant about breast and colorectal cancer screenings.

“Breast cancer is the leading cause of cancer death for women worldwide, and the second leading cause of cancer deaths for women in the United States,” says Desiree Chow, MD, Assistant Professor of Medicine (General Internal Medicine) at the Icahn School of Medicine at Mount Sinai. “However, for Asian Americans and Pacific Islanders, these groups have been found to consistently score lower than their non-Hispanic white counterparts for breast cancer screening.”

A similar theme echoes in colorectal cancer, notes Sanghyun (Alex) Kim, MD, Chief of Colon and Rectal Surgery at Mount Sinai Beth Israel, Mount Sinai-Union Square, and Mount Sinai Morningside. “Not only are we seeing lower screen rates for AAPI communities in colon cancer, but over the last 20 years, we’ve seen a twelvefold increase in colon cancer rates in these populations,” says Dr. Kim. “This is why it’s very important for physicians who see AAPI patients to be proactive in reminding them to be screened regularly.”

Left: Desiree Chow, MD. Right: Sanghyun (Alex) Kim, MD.

What are the disparities in cancer screening rates among different races/ethnicities?

While breast and colorectal cancer screening rates have steadily grown over the years, Asian American and Pacific Islander (AAPI) populations screen at a lower rate than the non-Hispanic white population. Here’s a snapshot of how each group screens for those cancers from 2008 to 2018, according to a report from the Centers for Disease Control and Prevention (CDC).


Source: Health, 2019, National Center for Health Statistics, CDC

As the COVID-19 pandemic hit, screening rates declined in 2020—by as much as 97 percent for breast cancer for AAPI communities compared with the previous five-year average, according to an April 2023 memo from the CDC. To address the decline in screening among certain populations, the agency is partnering with health care providers to resume timely use of preventive tests for early detection of breast, cervical, colorectal, and lung cancers.

Drs. Chow and Kim share their thoughts on the importance of being up to date with breast and colorectal cancer screenings, respectively.

Why are we calling for our AAPI communities to be vigilant about breast and colorectal cancer screening?

Dr. Chow: In general, Asian American women tend to have dense breasts, which is an independent risk factor for breast cancer and it decreases the ability for mammograms to detect small lesions. So in addition to the higher risk, Asian Americans having lower rates of screening, which is concerning and needs to be addressed.

Dr. Kim: Some 20 years ago when I went into colorectal surgery, the number of surgeries for colorectal cancer for Asian Americans was lower than for their white, Hispanic, or Black counterparts. Since then, that number has increased 12 times—not 12 percent—in America. On top of that, AAPI individuals are known to be less up to date on colorectal screening. Part of it could be a greater focus on other kinds of cancers—such as stomach and liver—instead, and part of it could be attributed to a tendency to play down illnesses and not be very good at following up with doctors.

Who should be thinking about screening? How often should it be done?

Dr. Chow: The United States Preventive Services Task Force (USPSTF), the body that sets guidelines for screening in the country, has recently updated their recommendation for women to start screening for breast cancer at the age of 40, every two years. However, there are other factors that could push one to start screening earlier or screen more frequently, and that is a conversation to have with a health care provider. These could include having a family history of breast cancer or having a genetic predisposition to breast cancer, such as a BRCA gene mutation.

Dr. Kim: The USPSTF recommends screening for colon cancer as early as the age of 45. Colonoscopies are the gold standard and would only have to be done every five to ten years. There are stool-based tests, which would have to be done every one to three years to provide comprehensive detection. This recommendation is the same for both men and women, although men have a higher prevalence of colon cancer. If a patient has a family history of cancer—could be of various types, including pancreas, stomach, liver, breast, endometrial or bladder—that person should consider early screening as well. A simple guideline would be: whatever age the family member had the cancer, the patient’s screening should be done at an age 10 years below that—thus for a patient whose family member had pancreatic cancer at age 50, the patient should get a colonoscopy at age 40.

What is involved in breast and colorectal cancer screenings? Is it painful/time-consuming?

Dr. Chow: The mammogram is the only screening method that has been shown to decrease mortality related to breast cancer. The best way to get a mammogram would be to get a referral from your primary care provider, or your OB/GYN. Under the Affordable Care Act (ACA), public and private insurance must provide preventive women’s health screening with no cost sharing. For those who do not have health insurance, there are ways to obtain low- or no-cost mammograms, as New York City and New York State have programs, such as free mammogram buses, that provide such screening.

The procedure itself is pretty simple, and a technician helps the patient position their breast in a machine that takes images of the breast tissue. Most women do not report significant pain—perhaps some discomfort as they might have to hold certain positions for imaging. But from start to finish, a patient could be in and out of the clinic in about 30 minutes.

Patient service representative Monet Douglas at the Mount Sinai Mammogram Screening Unit Truck

Dr. Kim: For stool-based tests, such as Cologuard®, a patient sends a stool sample to a lab, where it’ll be studied to see if it contains blood products and/or polyp components. However, such tests might miss some polyps, hence a need to do them more frequently. A colonoscopy, in which a tube with a camera is put into the rectum and colon, can not only discover polyps and cancerous tumors, but also treat and remove them. Under the ACA, colorectal cancer screening must be covered by public and private insurance without cost-sharing.

A colonoscopy does involve some preparation. The patient is instructed not to eat for about half a day, and to take a concoction that would rinse out the bowels. For the actual procedure, the patient is put to sleep and the doctor would examine the colon and rectum for polyps or signs of cancer. If polyps are removed, or cancer tumors are biopsied, there might be some pain or bleeding afterwards, but for most patients, colonoscopies are very well tolerated. The actual procedure itself takes about 30 minutes, although a patient might take an hour to recover after the exam.

What might be the consequences for not being vigilant about breast and colorectal cancer screening?

Dr. Chow: Missed breast cancer is the biggest consequence. By the time women feel a lump in their breast, the cancer is at a later stage, is harder to treat, and may have already spread to other parts of the body. The point of screening is to detect these cancers at an early stage, when they are still easily treatable and even curable. At an early stage, a patient is more likely to be offered breast conserving surgery, where only a portion of the breast is removed, rather than a mastectomy, where the entire breast is removed.

Dr. Kim: The thing about colon cancer is that it is a preventable cancer. If you can screen and detect signs before it presents as colon cancer, you can avoid more intensive treatment. When the cancer has penetrated into deeper layers of the colon, the surgery needed means you’ll lose more length of colon. If the cancer has advanced even more and spreads out of the colon, you will need not only surgery, but chemotherapy and radiation, and these are very intense on the body. For patients who get rectal cancer—that risk is higher for smokers—if not picked up early, there’s a chance to lose the anus, and that could mean needing a colostomy bag—a pouch in which stool comes out of the abdominal wall.

Any other advice for our AAPI communities to stay on top of their cancer screening?

Dr. Chow: I’ve noticed that some segments of the AAPI population might be less willing, or less able, to access health care. They should still try to form a close relationship with a primary care doctor, so that the doctor is aware of their risk factors and can advise them accordingly. For Asian Americans specifically, there’s a misconception that Asian women don’t get breast cancer as frequently. That’s not so true anymore, as the incidence of breast cancer has been steadily rising since 2000. And lastly, there’s a misconception that if a patient leads a healthy lifestyle, with no family history of breast cancer, they won’t get it. That’s great in that they’re at lower risk, but the majority of breast cancer cases are de novo, meaning the mutation happens for reasons we don’t know. If you meet the guidelines for breast cancer screening and have not done it, do seek it out as soon as you can.

Dr. Kim: I’ve noticed among my Asian patients that the cultural tendency of not wanting to speak up about pain or discomfort is actually working against them for their health. Keeping concerns to yourself hinders proper care. Another thing I’ve noticed is that some—usually older, immigrant individuals—trust their doctors too much and expect their doctors to know and handle everything, while others—sometimes younger, American-born individuals—don’t trust their doctors enough, might have a distrust of the system, or believe they know their body better than the doctor does. Either extreme is not good. The solution to break through to both is patient education and building trust. First, getting information out there about why cancer screening is important helps patients understand the risks. Then, the primary care doctor needs to build a close relationship with the patient, so that the patient actually goes to the screening, but just as importantly, trusts the doctor enough to come back for any follow-ups.

Advancing Heath Equity With Data: Collaborating With Stakeholders at Mount Sinai Queens

Jill Goldstein, MA, MS, RN

At Mount Sinai, a key pillar in advancing health equity focuses on the collection and use of self-reported patient demographic data to identify gaps in care. The Health Equity Data Assessment (HEDA) team is engaging key stakeholders across the Health System and collaborating to address variances.

A highlight of these efforts is the Mount Sinai Queens Nurses Against Racism (NAR) system council, which endeavored to evaluate incidences of hospital-acquired pressure injuries (HAPI) using an equity lens.

A pressure injury is a localized injury to the skin and/or underlying tissue, resulting from compression between a bony prominence and an external surface for a prolonged time. Monitoring HAPI specifically focuses on the occurrence of these injuries during an inpatient hospital stay.

According to Jill Goldstein, MA, MS, RN, Deputy Chief Nursing Officer, Vice President of Nursing at Mount Sinai Queens, and NAR sponsor, their collaboration with HEDA began in January 2023, combining subject matter expertise and data modeling to evaluate differences in HAPI rates across patient populations. She  noted that the interdisciplinary team explored the impact of race, gender, age, language, payor, length of stay, clinical service, and other factors on the incidences of hospital-acquired pressure injuries.

Further, the data showed that in terms of race, there were no meaningful differences observed between white, Black, or Hispanic patients in any model.

Notably, the most actionable finding was the elevated risk for patients who prefer to speak a language other than English or Spanish. In these patients, 40 percent were more likely to have documented HAPI when compared to English-speaking patients.

With the data the HEDA team helped to collect and interpret, the system-wide nursing team will seek interventions to eliminate this disparity. This interdisciplinary approach serves as a model to incorporate an equity lens into other quality work, according to Ms. Goldstein.

New Opera on a Gender-Affirmation Pioneer Is Authored by Mount Sinai Neuroradiologist

A new opera, Lili Elbe, tells the story of one of the earliest recipients of gender-affirming surgery in 1930. The opera is a collaboration of Grammy Award-winning composer Tobias Picker and Aryeh Lev Stollman, MD, a neuroradiologist at Mount Sinai, who wrote the story and lyrics. Photos: Edyta Dufaj

“It’s a love story,” says Aryeh Lev Stollman, MD, a neuroradiologist at Mount Sinai, and the librettist for a new opera, Lili Elbe, which tells the story of one of the earliest recipients of gender-affirming surgery, in 1930. The opera, commissioned by the Theater St. Gallen of Switzerland, was named “Best World Premiere of 2023” at the OPER! AWARDS ceremony on January 29 at the Dutch National Opera in Amsterdam.

Lili Elbe focuses on a successful Danish painter who was married to another painter, Gerda Wegener. Though their marriage was eventually annulled by the King of Denmark and Lili’s name and sex were legally changed, they remained in love with each other. Lili’s case drew international attention, and a semi-autographical account of her story was captured in a book, Man Into Woman: An Authentic Record of a Change of Sex. Another book, The Danish Girl, was loosely based on her story and has become an important text in LGBQT+ literature and the basis for a film.

“We based our story on historical sources,” emphasizes Dr. Stollman. “The Danish Girl was highly fictionalized. But Lili Elbe was quite famous in her day, so we relied on her own writings and news accounts from the time.”

The opera Lili Elbe, in addition to being acclaimed for its artistry, is a significant milestone. It stars Lucia Lucas, a baritone, in the first grand opera for and about a person with trans experience. The Grammy Award-winning composer Tobias Picker, who is married to Dr. Stollman, befriended Lucia when he cast her in Don Giovanni in a Tulsa Opera production—the first time a transgender singer had played the leading role in an American opera. Mr. Picker, Dr. Stollman, and Lucia wanted to collaborate on an original project, and the story of Lili Elbe was chosen.

Tobias Picker, left, and Aryeh Lev Stollman, MD, taking a bow after a performance of the new opera at the Theater Saint Gallen in Switzerland. “This resonates with our work as physicians, health care workers, and support staff, because behind our work is love for humanity,” says Dr. Stollman. “We serve people, no matter their physical appearance, their background, or gender identity. And we do it through all types of difficult times and situations.”

“Tobias asked me to write the libretto—or the story and lyrics,” Dr. Stollman says. “But I worked very closely with Lucia as the dramaturg, to gain the insight of her experience and authenticity.” This is the second time Mr. Picker and Dr. Stollman have collaborated. The first was the inspiring opera Awakenings, based on the story of Oliver Sacks, MD, and his efforts to treat patients with sleeping sickness. That opera opened in June 2022 at the Opera Theatre of Saint Louis.

“Like Awakenings, we wanted Lili Elbe to have a mythic undercurrent,” Dr. Stollman says. “In Awakenings, we used the story of Sleeping Beauty. In Lili Elbe, the myth of Orpheus leading his lover, Eurydice, out of the underworld is a motif that reoccurs. I believe that myths have a strong emotional truth. In the myth, Orpheus is saying, ‘Don’t look back, you cannot return to your old life, but you are coming into a new life.’ And our characters are always moving to the future, to a new life, a new realization. And that’s the mythological underpinning.”

Lili Elbe discovers her true nature as a woman when her wife, Gerda, asks her to stand in for a female model who was delayed for a painting session. Gerda is entranced with the beauty of her husband, then called Einar Wegener, and it is she who bestows the name Lili. And as Lili embraces her identity, she says, “When you paint me now, I feel I have always been her.” Lili becomes a muse to Gerda, whose paintings of Lili win acclaim. But Gerda wrestles with how much space to allow Lili in their marriage. At first, she insists that Lili transition back to Einar in the evening. But as Lili makes her true identity known among their circle of friends, Lili wants to experience all the feelings of womanhood, including marriage and motherhood. And even though their marriage is annulled and they become involved with other lovers, their love for each other endures.

Lili becomes engaged to Claude LeJeune, a young man whose passion is creating perfumes from flowers through a delicate process called enfleurage. The symbolism of the flowers living on becomes a motif as Lili dies as a result of complications of one of her surgeries. And the life and story of Lili Elbe still resonate today.

“The opera is more than about love with a transgender person,” Dr. Stollman says. “It’s about love and transcending difficulties. It’s about a tragic heroine’s journey that starts with self-knowledge. And it’s about loss, because Gerda loses Lili. But also because Lili dies in the end, as many tragic heroines do.”

The staging and choreography of the opera are innovative, witty, and symbolic. As Gerda exhibits her paintings of Lili, they are symbolized by actors suspended above the stage, swirling in evocative poses. The prominent German newspaper Die Welt gave it an enthusiastic review, calling it “emotionally gripping, a delicate work of musical theater that unfolds as an Art Nouveau arc, amidst a bright, symbolist stage.” A leading Austrian paper, the Voralberger Zeitung, called it “an emotionally charged masterpiece.”

Dr. Stollman related the theme of love transcending all to the mission of Mount Sinai, which was founded to care for underserved people and is home to the Center for Transgender Medicine and Surgery, a world leader in gender-affirming care. “This resonates with our work as physicians, health care workers, and support staff, because behind our work is love for humanity. We serve people, no matter their physical appearance, their background, or gender identity. And we do it through all types of difficult times and situations.”

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