Blog post

Building an inclusive data practice

Data-driven practice is at the heart of all we do at Delfina...

Authors
Authors
Authors
Senan Ebrahim
https://www.delfina.com/resource/building-an-inclusive-data-practice

Data-driven practice is at the heart of all we do at Delfina. But what about cases where the data simply doesn’t exist? When it comes to how LGBTQ+ patients experience pregnancy, the medical community has too often missed out on asking the right questions—or any questions at all. The absence of data has led to a significant missing data challenge for those striving to build a more equitable care system for LGBTQ+ patients. In order to build a truly inclusive pregnancy care solution, we need more data.

A few researchers have found clever ways to conduct pregnancy-related research on LGBTQ+ populations in this data desert. My friend Dr. Iman Berrahou collaborated with Dr. Stephanie Leonard on a creative study rigorously assessing disparities in pregnancy outcomes based on the information found on California birth certificates. In 2016, California changed its birth certificate categories to include the gender-neutral terms  "parent giving birth" and "parent not giving birth." Then, each role was given the opportunity to specify "mother," "father," or "parent." From these variables, Leonard, Berrahou, and their co-authors were able to categorize any birthing parent in a mother-mother partnership, along with any patient who identified both as “birthing parent” and “father,” as “sexual and/or gender minorities.” 

Using this approach, their study was able to draw conclusions around the experiences of the “sexual and/or gender minority” patients. From a sample of over 1 million total parents, they found that birthing patients in mother-mother pairings experienced higher rates of postpartum hemorrhage and severe morbidity. Other studies have suggested that lesbian parents experience higher rates of stillbirth. As Dr. Berrahou explained, “there’s a really critical need to understand better what is happening to people as they are getting pregnant and going through their pregnancies.” 

However, it can be difficult to even identify potential disparities with so little data. “Right now we’re functioning from a place of not knowing this information because we haven’t been asking,” says Dr. Berrahou. In contrast to other historically marginalized groups, for whom there has been a concerted push to identify and ultimately reduce disparities in outcomes, the medical establishment has not yet centered LGBTQ+ patient experiences in most analyses on healthcare disparities. 

At Delfina, we are building the largest and most useful dataset in pregnancy. We must acknowledge that patients can be marginalized from a data standpoint as well as a clinical standpoint. Over the next decade, we will build a sufficiently informative dataset that we can support patients of all backgrounds with the kind of award-winning analysis we have already conducted to reduce disparities in pregnancy outcomes. We offer patients the opportunity to confidentially and securely share this information about themselves to render the optimal dataset to personalize their care.

Building an inclusive data practice is not only about the long-term benefits for research. We aim to care for each one of our patients as a whole person, and that includes their gender and sexuality. In order to best create support systems for our patients to thrive during their pregnancy journeys, we have to know how to anticipate their needs. By providing patients with a safe environment to share these aspects of their identity, we will gather the necessary data to provide equitable patient-centric care. 

The current default healthcare data practice fails to do so, and this has been damaging to LGBTQ+ patients. During a shift in the emergency department prior to founding Delfina, I helped care for a patient with metastatic ovarian cancer, who identified as male. He had intentionally limited his interactions with the healthcare system—even well before the pandemic—with tragic consequences for his cancer prognosis. He described feeling ignored and marginalized by clinicians, who had generally not even asked his gender and if he volunteered it, neglected to refer to him correctly in his presence. As he put it to me, "If you were me, would you ever want to be back here?"

Ultimately, we at Delfina are changing this by build a pregnancy care solution that centers the whole person. We strive to build a system in which the answer to my patient’s question would be an unequivocal yes. In order to best serve all communities, especially like LGBTQ+ patients who are so underrepresented in traditional pregnancy narratives, we need extensive and representative data. We will ask the right questions, answer with data, and drive our system forward to eliminate disparities.

Thank you! Your submission has been received!
Oops! Something went wrong while submitting the form.
Blog post

Building an inclusive data practice

Data-driven practice is at the heart of all we do at Delfina...

Authors
Authors
Authors
Senan Ebrahim
https://www.delfina.com/resource/building-an-inclusive-data-practice

Data-driven practice is at the heart of all we do at Delfina. But what about cases where the data simply doesn’t exist? When it comes to how LGBTQ+ patients experience pregnancy, the medical community has too often missed out on asking the right questions—or any questions at all. The absence of data has led to a significant missing data challenge for those striving to build a more equitable care system for LGBTQ+ patients. In order to build a truly inclusive pregnancy care solution, we need more data.

A few researchers have found clever ways to conduct pregnancy-related research on LGBTQ+ populations in this data desert. My friend Dr. Iman Berrahou collaborated with Dr. Stephanie Leonard on a creative study rigorously assessing disparities in pregnancy outcomes based on the information found on California birth certificates. In 2016, California changed its birth certificate categories to include the gender-neutral terms  "parent giving birth" and "parent not giving birth." Then, each role was given the opportunity to specify "mother," "father," or "parent." From these variables, Leonard, Berrahou, and their co-authors were able to categorize any birthing parent in a mother-mother partnership, along with any patient who identified both as “birthing parent” and “father,” as “sexual and/or gender minorities.” 

Using this approach, their study was able to draw conclusions around the experiences of the “sexual and/or gender minority” patients. From a sample of over 1 million total parents, they found that birthing patients in mother-mother pairings experienced higher rates of postpartum hemorrhage and severe morbidity. Other studies have suggested that lesbian parents experience higher rates of stillbirth. As Dr. Berrahou explained, “there’s a really critical need to understand better what is happening to people as they are getting pregnant and going through their pregnancies.” 

However, it can be difficult to even identify potential disparities with so little data. “Right now we’re functioning from a place of not knowing this information because we haven’t been asking,” says Dr. Berrahou. In contrast to other historically marginalized groups, for whom there has been a concerted push to identify and ultimately reduce disparities in outcomes, the medical establishment has not yet centered LGBTQ+ patient experiences in most analyses on healthcare disparities. 

At Delfina, we are building the largest and most useful dataset in pregnancy. We must acknowledge that patients can be marginalized from a data standpoint as well as a clinical standpoint. Over the next decade, we will build a sufficiently informative dataset that we can support patients of all backgrounds with the kind of award-winning analysis we have already conducted to reduce disparities in pregnancy outcomes. We offer patients the opportunity to confidentially and securely share this information about themselves to render the optimal dataset to personalize their care.

Building an inclusive data practice is not only about the long-term benefits for research. We aim to care for each one of our patients as a whole person, and that includes their gender and sexuality. In order to best create support systems for our patients to thrive during their pregnancy journeys, we have to know how to anticipate their needs. By providing patients with a safe environment to share these aspects of their identity, we will gather the necessary data to provide equitable patient-centric care. 

The current default healthcare data practice fails to do so, and this has been damaging to LGBTQ+ patients. During a shift in the emergency department prior to founding Delfina, I helped care for a patient with metastatic ovarian cancer, who identified as male. He had intentionally limited his interactions with the healthcare system—even well before the pandemic—with tragic consequences for his cancer prognosis. He described feeling ignored and marginalized by clinicians, who had generally not even asked his gender and if he volunteered it, neglected to refer to him correctly in his presence. As he put it to me, "If you were me, would you ever want to be back here?"

Ultimately, we at Delfina are changing this by build a pregnancy care solution that centers the whole person. We strive to build a system in which the answer to my patient’s question would be an unequivocal yes. In order to best serve all communities, especially like LGBTQ+ patients who are so underrepresented in traditional pregnancy narratives, we need extensive and representative data. We will ask the right questions, answer with data, and drive our system forward to eliminate disparities.

Blog post

Building an inclusive data practice

Data-driven practice is at the heart of all we do at Delfina...

Authors
Authors
Authors
Senan Ebrahim
https://www.delfina.com/resource/building-an-inclusive-data-practice

Data-driven practice is at the heart of all we do at Delfina. But what about cases where the data simply doesn’t exist? When it comes to how LGBTQ+ patients experience pregnancy, the medical community has too often missed out on asking the right questions—or any questions at all. The absence of data has led to a significant missing data challenge for those striving to build a more equitable care system for LGBTQ+ patients. In order to build a truly inclusive pregnancy care solution, we need more data.

A few researchers have found clever ways to conduct pregnancy-related research on LGBTQ+ populations in this data desert. My friend Dr. Iman Berrahou collaborated with Dr. Stephanie Leonard on a creative study rigorously assessing disparities in pregnancy outcomes based on the information found on California birth certificates. In 2016, California changed its birth certificate categories to include the gender-neutral terms  "parent giving birth" and "parent not giving birth." Then, each role was given the opportunity to specify "mother," "father," or "parent." From these variables, Leonard, Berrahou, and their co-authors were able to categorize any birthing parent in a mother-mother partnership, along with any patient who identified both as “birthing parent” and “father,” as “sexual and/or gender minorities.” 

Using this approach, their study was able to draw conclusions around the experiences of the “sexual and/or gender minority” patients. From a sample of over 1 million total parents, they found that birthing patients in mother-mother pairings experienced higher rates of postpartum hemorrhage and severe morbidity. Other studies have suggested that lesbian parents experience higher rates of stillbirth. As Dr. Berrahou explained, “there’s a really critical need to understand better what is happening to people as they are getting pregnant and going through their pregnancies.” 

However, it can be difficult to even identify potential disparities with so little data. “Right now we’re functioning from a place of not knowing this information because we haven’t been asking,” says Dr. Berrahou. In contrast to other historically marginalized groups, for whom there has been a concerted push to identify and ultimately reduce disparities in outcomes, the medical establishment has not yet centered LGBTQ+ patient experiences in most analyses on healthcare disparities. 

At Delfina, we are building the largest and most useful dataset in pregnancy. We must acknowledge that patients can be marginalized from a data standpoint as well as a clinical standpoint. Over the next decade, we will build a sufficiently informative dataset that we can support patients of all backgrounds with the kind of award-winning analysis we have already conducted to reduce disparities in pregnancy outcomes. We offer patients the opportunity to confidentially and securely share this information about themselves to render the optimal dataset to personalize their care.

Building an inclusive data practice is not only about the long-term benefits for research. We aim to care for each one of our patients as a whole person, and that includes their gender and sexuality. In order to best create support systems for our patients to thrive during their pregnancy journeys, we have to know how to anticipate their needs. By providing patients with a safe environment to share these aspects of their identity, we will gather the necessary data to provide equitable patient-centric care. 

The current default healthcare data practice fails to do so, and this has been damaging to LGBTQ+ patients. During a shift in the emergency department prior to founding Delfina, I helped care for a patient with metastatic ovarian cancer, who identified as male. He had intentionally limited his interactions with the healthcare system—even well before the pandemic—with tragic consequences for his cancer prognosis. He described feeling ignored and marginalized by clinicians, who had generally not even asked his gender and if he volunteered it, neglected to refer to him correctly in his presence. As he put it to me, "If you were me, would you ever want to be back here?"

Ultimately, we at Delfina are changing this by build a pregnancy care solution that centers the whole person. We strive to build a system in which the answer to my patient’s question would be an unequivocal yes. In order to best serve all communities, especially like LGBTQ+ patients who are so underrepresented in traditional pregnancy narratives, we need extensive and representative data. We will ask the right questions, answer with data, and drive our system forward to eliminate disparities.

Blog post

Building an inclusive data practice

Data-driven practice is at the heart of all we do at Delfina...

Authors
Authors
Authors
Senan Ebrahim
https://www.delfina.com/resource/building-an-inclusive-data-practice

Data-driven practice is at the heart of all we do at Delfina. But what about cases where the data simply doesn’t exist? When it comes to how LGBTQ+ patients experience pregnancy, the medical community has too often missed out on asking the right questions—or any questions at all. The absence of data has led to a significant missing data challenge for those striving to build a more equitable care system for LGBTQ+ patients. In order to build a truly inclusive pregnancy care solution, we need more data.

A few researchers have found clever ways to conduct pregnancy-related research on LGBTQ+ populations in this data desert. My friend Dr. Iman Berrahou collaborated with Dr. Stephanie Leonard on a creative study rigorously assessing disparities in pregnancy outcomes based on the information found on California birth certificates. In 2016, California changed its birth certificate categories to include the gender-neutral terms  "parent giving birth" and "parent not giving birth." Then, each role was given the opportunity to specify "mother," "father," or "parent." From these variables, Leonard, Berrahou, and their co-authors were able to categorize any birthing parent in a mother-mother partnership, along with any patient who identified both as “birthing parent” and “father,” as “sexual and/or gender minorities.” 

Using this approach, their study was able to draw conclusions around the experiences of the “sexual and/or gender minority” patients. From a sample of over 1 million total parents, they found that birthing patients in mother-mother pairings experienced higher rates of postpartum hemorrhage and severe morbidity. Other studies have suggested that lesbian parents experience higher rates of stillbirth. As Dr. Berrahou explained, “there’s a really critical need to understand better what is happening to people as they are getting pregnant and going through their pregnancies.” 

However, it can be difficult to even identify potential disparities with so little data. “Right now we’re functioning from a place of not knowing this information because we haven’t been asking,” says Dr. Berrahou. In contrast to other historically marginalized groups, for whom there has been a concerted push to identify and ultimately reduce disparities in outcomes, the medical establishment has not yet centered LGBTQ+ patient experiences in most analyses on healthcare disparities. 

At Delfina, we are building the largest and most useful dataset in pregnancy. We must acknowledge that patients can be marginalized from a data standpoint as well as a clinical standpoint. Over the next decade, we will build a sufficiently informative dataset that we can support patients of all backgrounds with the kind of award-winning analysis we have already conducted to reduce disparities in pregnancy outcomes. We offer patients the opportunity to confidentially and securely share this information about themselves to render the optimal dataset to personalize their care.

Building an inclusive data practice is not only about the long-term benefits for research. We aim to care for each one of our patients as a whole person, and that includes their gender and sexuality. In order to best create support systems for our patients to thrive during their pregnancy journeys, we have to know how to anticipate their needs. By providing patients with a safe environment to share these aspects of their identity, we will gather the necessary data to provide equitable patient-centric care. 

The current default healthcare data practice fails to do so, and this has been damaging to LGBTQ+ patients. During a shift in the emergency department prior to founding Delfina, I helped care for a patient with metastatic ovarian cancer, who identified as male. He had intentionally limited his interactions with the healthcare system—even well before the pandemic—with tragic consequences for his cancer prognosis. He described feeling ignored and marginalized by clinicians, who had generally not even asked his gender and if he volunteered it, neglected to refer to him correctly in his presence. As he put it to me, "If you were me, would you ever want to be back here?"

Ultimately, we at Delfina are changing this by build a pregnancy care solution that centers the whole person. We strive to build a system in which the answer to my patient’s question would be an unequivocal yes. In order to best serve all communities, especially like LGBTQ+ patients who are so underrepresented in traditional pregnancy narratives, we need extensive and representative data. We will ask the right questions, answer with data, and drive our system forward to eliminate disparities.

Blog post

Building an inclusive data practice

Data-driven practice is at the heart of all we do at Delfina...

https://www.delfina.com/resource/building-an-inclusive-data-practice

Data-driven practice is at the heart of all we do at Delfina. But what about cases where the data simply doesn’t exist? When it comes to how LGBTQ+ patients experience pregnancy, the medical community has too often missed out on asking the right questions—or any questions at all. The absence of data has led to a significant missing data challenge for those striving to build a more equitable care system for LGBTQ+ patients. In order to build a truly inclusive pregnancy care solution, we need more data.

A few researchers have found clever ways to conduct pregnancy-related research on LGBTQ+ populations in this data desert. My friend Dr. Iman Berrahou collaborated with Dr. Stephanie Leonard on a creative study rigorously assessing disparities in pregnancy outcomes based on the information found on California birth certificates. In 2016, California changed its birth certificate categories to include the gender-neutral terms  "parent giving birth" and "parent not giving birth." Then, each role was given the opportunity to specify "mother," "father," or "parent." From these variables, Leonard, Berrahou, and their co-authors were able to categorize any birthing parent in a mother-mother partnership, along with any patient who identified both as “birthing parent” and “father,” as “sexual and/or gender minorities.” 

Using this approach, their study was able to draw conclusions around the experiences of the “sexual and/or gender minority” patients. From a sample of over 1 million total parents, they found that birthing patients in mother-mother pairings experienced higher rates of postpartum hemorrhage and severe morbidity. Other studies have suggested that lesbian parents experience higher rates of stillbirth. As Dr. Berrahou explained, “there’s a really critical need to understand better what is happening to people as they are getting pregnant and going through their pregnancies.” 

However, it can be difficult to even identify potential disparities with so little data. “Right now we’re functioning from a place of not knowing this information because we haven’t been asking,” says Dr. Berrahou. In contrast to other historically marginalized groups, for whom there has been a concerted push to identify and ultimately reduce disparities in outcomes, the medical establishment has not yet centered LGBTQ+ patient experiences in most analyses on healthcare disparities. 

At Delfina, we are building the largest and most useful dataset in pregnancy. We must acknowledge that patients can be marginalized from a data standpoint as well as a clinical standpoint. Over the next decade, we will build a sufficiently informative dataset that we can support patients of all backgrounds with the kind of award-winning analysis we have already conducted to reduce disparities in pregnancy outcomes. We offer patients the opportunity to confidentially and securely share this information about themselves to render the optimal dataset to personalize their care.

Building an inclusive data practice is not only about the long-term benefits for research. We aim to care for each one of our patients as a whole person, and that includes their gender and sexuality. In order to best create support systems for our patients to thrive during their pregnancy journeys, we have to know how to anticipate their needs. By providing patients with a safe environment to share these aspects of their identity, we will gather the necessary data to provide equitable patient-centric care. 

The current default healthcare data practice fails to do so, and this has been damaging to LGBTQ+ patients. During a shift in the emergency department prior to founding Delfina, I helped care for a patient with metastatic ovarian cancer, who identified as male. He had intentionally limited his interactions with the healthcare system—even well before the pandemic—with tragic consequences for his cancer prognosis. He described feeling ignored and marginalized by clinicians, who had generally not even asked his gender and if he volunteered it, neglected to refer to him correctly in his presence. As he put it to me, "If you were me, would you ever want to be back here?"

Ultimately, we at Delfina are changing this by build a pregnancy care solution that centers the whole person. We strive to build a system in which the answer to my patient’s question would be an unequivocal yes. In order to best serve all communities, especially like LGBTQ+ patients who are so underrepresented in traditional pregnancy narratives, we need extensive and representative data. We will ask the right questions, answer with data, and drive our system forward to eliminate disparities.

Blog post

Building an inclusive data practice

Data-driven practice is at the heart of all we do at Delfina...

Guests
No items found.
https://www.delfina.com/resource/building-an-inclusive-data-practice