Health Systems + Women’s Health + Health Equity

Health Systems, Health Equity & Patient-Reported Experience Measures

Research by Dr. Nisha Malhotra, Economist and Health Policy Researcher

This research examines how health systems deliver care across different populations, with a focus on health equity, women’s and perinatal health, patient experience, access, respect, autonomy, communication, and quality of care. Using patient-reported experience measures, psychometric methods, and national survey data, the work investigates pregnancy-loss care, weight-based disparities in maternity care, primary-care access, wait times, and broader inequities in the Canadian healthcare system.

This programme brings together health systems research, applied economics, women’s health, health equity, and patient-reported experience measurement. It demonstrates that health-system performance cannot be assessed only through clinical outcomes, service use, or availability of care. Communication, compassion, autonomy, respectful care, and timely access are also measurable dimensions of healthcare quality.

ORCID iD icon https://orcid.org/0000-0001-7809-0278

Research areas: Health systems, patient-reported experience measures, women’s and perinatal health, health equity, applied econometrics
Flagship Paper-Canadian Perinatal Care Inequities Access the Psychometric CDL Index & Guidelines
Health Coverage and the Experience of Care

Does universal healthcare coverage ensure equitable experiences of maternity and perinatal care?

Not necessarily. Canada and the United States have very different healthcare systems, yet research across both countries finds recurring inequities in autonomy, respect, communication, consent and mistreatment. Universal coverage can reduce financial barriers to medically necessary care, but it does not by itself ensure that all patients are heard, treated with dignity, or equally involved in decisions.

Dr. Nisha Malhotra’s health equity research uses patient-reported experience measures, psychometric tools and national survey data to examine how care is experienced across population groups. In Canada, this work identifies disparities associated with BMI, Indigenous identity, racialized identity, pregnancy loss, income, education and access to care. In the United States, related studies examine provider type, place of birth, coercion and non-consent during birth and newborn care.

The central finding across this research programme is that healthcare quality is not only clinical. It is also relational: who is listened to, who is respected, who retains autonomy, who gives meaningful consent, and who experiences mistreatment. Patient-reported experience measures make these inequities visible.

Factors this research identifies as shaping experiences of care

BMI and weight stigma

Higher BMI is associated with lower autonomy, lower respect and greater mistreatment in Canadian perinatal care.

Indigenous identity

Indigenous Peoples report poorer experiences of respectful care and higher mistreatment across Canadian maternity settings.

Racialized identity

Racialized patients report poorer experiences in pregnancy-loss care and maternity care more broadly.

Pregnancy loss

Experiences of miscarriage and perinatal loss reveal gaps in listening, communication and compassionate disclosure.

Provider type and place of birth

U.S. research shows that autonomy, respect and mistreatment vary by provider type and birth setting.

Consent and coercion

Coercion and non-consent remain measurable features of birth and newborn care, especially for racialized groups.

I. Canadian Perinatal Health Equity Research

These studies examine Canadian perinatal and pregnancy-loss care through the lens of patient experience, communication, respect, autonomy, and measurable health-system equity.

Latest Publication

Birthing Injustice: Structural Racism, Respect and Autonomy in Indigenous Perinatal Care

This national Canadian study uses validated patient-reported measures from the RESPCCT study to examine respect, mistreatment, informed consent, bodily autonomy and cultural safety in pregnancy and childbirth care among Indigenous participants.

Indigenous leadership and research collaboration

This analysis with Wanda Phillips-Beck, an Anishinaabe nurse scholar and the paper’s first author, with guidance from Elder Roberta Price. Indigenous leadership shaped the framing, interpretation and implications of the findings.

Impact & Contribution

  • Substantial disparities: 63.0% of Indigenous participants reported mistreatment and 74.6% reported disrespect during childbirth.
  • Intersectional inequities: Mistreatment and disrespect were especially pronounced among younger Indigenous participants and those whose Indigenous partner was involved in care.
  • Models of care: Midwifery-led intrapartum care was associated with lower reported mistreatment and disrespect.
  • Rights-based contribution: The study treats respect, informed consent, bodily autonomy and cultural safety as measurable dimensions of healthcare quality.

Why it matters

The findings show that universal healthcare and formal commitments to reconciliation do not automatically produce respectful, culturally safe or rights-based perinatal care.

Read Open-Access Article Download Research Summary Wanda Phillips-Beck: Profile
Research context, Indigenous data governance and system-change priorities

Community participation and relational accountability

The broader RESPCCT study used a community-participatory approach, with Indigenous members and Indigenous community and professional organizations contributing to study design, instrument development, pilot testing and recruitment.

Indigenous data governance

Indigenous Peoples hold inherent rights and interests in data concerning their communities, identities and experiences. Indigenous leadership was central to the interpretation, communication and proposed use of the findings.

Findings were reported collectively because the sample did not support Nation-specific estimates. The study recognizes First Nations, Inuit and Métis Peoples as distinct and does not treat combined national findings as a substitute for Nation-specific knowledge or data governance.

Priorities for system change

  • Centre Indigenous leadership in maternity-care policy, service design, professional education and research.
  • Strengthen Indigenous-controlled, community-based and culturally grounded maternity-care services.
  • Establish transparent accountability for racism, mistreatment and disrespect.
  • Protect informed consent, bodily autonomy and the right to culturally safe care.

Funding and support

The research was supported by the Birth Place Lab and funded through Canadian Institutes of Health Research grants 507741 and 392273.

Cite: Phillips-Beck, W., Malhotra, N., Stoll, K., Price, E. R., & Vedam, S. (2026). Birthing Injustice: Unmasking Structural Racism and the Illusion of Reconciliation in Indigenous Perinatal Care—Insights from RESPCCT: A Canadian Study on Respect and Mistreatment. Frontiers in Global Women’s Health, 7, 1780855.

https://doi.org/10.3389/fgwh.2026.1780855

Paper 1

Inequities in Care During Pregnancy Loss: Measuring compassion, communication, and support in Canadian perinatal bereavement care

Research Summary: Inequities in Pregnancy loss Care & CDL index

What inequities do patients experience during pregnancy-loss care in Canada? Using patient-reported experience data from the RESPCCT study, this paper examines communication, listening, compassion, autonomy and respectful care at the time of pregnancy loss. The findings show that pregnancy-loss care is not experienced equally and that racialized and Indigenous participants reported important disparities in whether they felt heard, respected and involved in decisions about their care.

Research Findings & Contribution

Research Findings & Contribution

  • Which dimensions of pregnancy-loss care can be measured? The study measures whether patients were listened to before the loss, how the loss was disclosed, whether communication was compassionate and clear, and whether patients experienced autonomy and respectful care. These indicators make visible aspects of bereavement care that are rarely captured in administrative or clinical data.
  • Which populations experienced greater inequities in care? Racialized and Indigenous participants reported disparities in communication, autonomy and respectful treatment. The findings show that inequities can occur not only in access to services or clinical outcomes, but also in how patients are spoken to, listened to and supported during pregnancy loss.
  • Why is communication at the time of pregnancy loss a health-system quality issue? The way a loss is disclosed can shape whether patients feel supported, abandoned, blamed or excluded from decisions. Compassionate communication is therefore not an optional interpersonal quality; it is a measurable component of safe, respectful and patient-centred healthcare.
  • What new measurement tool does the study introduce? The paper introduces the Compassionate Disclosure of Loss Index, a six-item patient-reported measure designed to assess the quality of communication when pregnancy loss is disclosed. The index provides a structured way to study compassion, clarity, emotional support and responsiveness in bereavement care.

What do the findings imply for pregnancy-loss and bereavement care?

Health systems should treat communication, listening and compassionate disclosure as core standards of pregnancy-loss care. The findings support provider education, patient-experience monitoring and clearer accountability for whether patients receive respectful and supportive communication during and after a loss.

Why are patient-reported measures important in pregnancy-loss care?

Clinical records may document diagnosis, procedures and follow-up without showing how the loss was communicated or whether the patient felt heard and supported. Patient-reported measures allow researchers and health systems to evaluate these otherwise invisible dimensions of care quality.

Cite: Hall, W. A., Malhotra, N., Clark, E., Hodge, K., Griffith, G., & Vebam, S. (2026). Inequities in care during pregnancy loss: Empirical insights from experiences with Canadian perinatal care. Birth, 53, 215–223. https://doi.org/10.1111/birt.70020

Related Public Writing: Miscarriage in Silence: Intimate Loss and the Cold, Detached Language of Clinical Care
Open Research Resource

Compassionate Disclosure of Loss Index and Psychometric Guidelines

Download the six-item CDL Index, scoring guidance, psychometric results and practical guidance for researchers, clinicians, educators and health-system quality-improvement teams.

Download CDL Resource

What is the Compassionate Disclosure of Loss Index? The CDL Index is a six-item patient-reported experience measure (PREMs) developed developed by Dr. Malhotra to assess how sensitively and supportively healthcare professionals communicate a pregnancy loss. It focuses on whether information was conveyed with clarity, compassion, emotional awareness and responsiveness to the patient’s needs.

What does the CDL Index measure? The index captures dimensions of disclosure that are often absent from conventional healthcare indicators, including whether the patient felt prepared for the information, treated with sensitivity, given space to respond and supported through the immediate emotional impact of the loss.

How can researchers and health systems use the CDL Index? The index can be used to evaluate patient experiences, compare patterns across populations or care settings, examine inequities in bereavement care and assess the effects of education or quality-improvement initiatives. It can also support research on communication, trauma-informed care and patient-centred maternity services.

Why is a psychometric measure of compassionate disclosure needed? Compassion is often discussed as an ethical or professional expectation but rarely measured systematically. The CDL Index translates this concept into a reproducible patient-reported measure, allowing compassionate disclosure to be studied as an observable dimension of healthcare quality rather than an assumed feature of care.

© 2026 Nisha Malhotra and W. Hall. Available for non-commercial research, education, clinical practice and quality improvement under the Creative Commons Attribution–NonCommercial 4.0 International Licence . Attribution is required and adaptations must identify any changes.
How to cite, score and attribute this resource

Recommended attribution:
Nisha Malhotra, & Wendy Hall (2026). Guidelines for Constructing a Psychometric Index: Applied to the Compassionate Disclosure of (Perinatal) Loss Index . Licensed under CC BY-NC 4.0.

Original study:
Hall, W A., Malhotra, N., Clark, E., Hodge, K., Griffith, G., & Vebam, S. (2026). Inequities in care during pregnancy loss: Empirical insights from experiences with Canadian perinatal care. Birth, 53, 215–223. https://doi.org/10.1111/birt.70020

Resource contents:
The downloadable guide includes the six survey items, scoring approach, internal-consistency results, factor structure, analytical applications and considerations for research and clinical use.

Adapted versions:
“Adapted from the Compassionate Disclosure of Loss Index by Dr. Nisha Malhotra and Dr. W. Hall.”

Paper 2

Weight-Based Disparities in Canadian Perinatal Care: Respect, autonomy, mistreatment, and BMI in a national Canadian survey.
Research Summary & Policy Brief

Is pre-pregnancy BMI associated with experiences of mistreatment in perinatal care in Canada? Led by economist and health equity researcher Dr. Nisha Malhotra, this national Canadian study examines whether pre-pregnancy BMI is associated with how patients experience respect, autonomy and mistreatment during pregnancy and childbirth. Using patient-reported data from the national RESPCCT survey, Malhotra and colleagues found that people with higher pre-pregnancy BMI reported lower autonomy, less respectful care and greater mistreatment. The findings show that BMI is associated not only with clinical management, but also with communication, decision-making, dignity and respect within the Canadian healthcare system.

  • Which populations report greater inequities in perinatal care? Results from research conducted by Malhotra and colleagues provide evidence of association between Inequitable care experiences and racialized identity, Indigenous identity and socioeconomic status. The findings therefore place weight-based disparities within a broader pattern of intersecting inequities in Canadian maternity care.
    • Research Findings & Contribution Cont.

    Which populations report greater inequities in perinatal care? Results from research conducted by Malhotra and colleagues provide evidence of associations between inequitable care experiences and racialized identity, Indigenous identity and socioeconomic status. The findings therefore place weight-based disparities within a broader pattern of intersecting inequities in Canadian maternity care.

    Do weight-based disparities persist after accounting for socioeconomic and demographic factors? Higher BMI remained associated with poorer patient-reported care experiences after adjustment for income, education and other social and demographic characteristics. This suggests that the observed disparities cannot be explained solely by socioeconomic differences between BMI groups.

    Which dimensions of perinatal care are associated with BMI? The study identifies disparities across three related dimensions of patient experience: autonomy in decision-making, respectful treatment and exposure to mistreatment. Together, these measures capture whether patients felt heard, involved in their care and treated with dignity.

    How does this study measure weight-based inequity in healthcare? The analysis uses validated patient-reported experience measures of autonomy, respect and mistreatment to examine dimensions of healthcare quality that are often absent from clinical and administrative data. Dr. Malhotra’s approach identifies systemic inequities and quantifies differences in whether patients felt heard, respected and involved in decisions.

    What do the findings imply for Canadian maternity-care policy? The findings support policy responses that extend beyond individual provider awareness to include respectful-care standards, professional education, patient-experience monitoring and accountability for mistreatment and loss of autonomy. Dr. Nisha Malhotra’s research positions weight-based disparities as a healthcare-quality and health-equity issue rather than solely a matter of individual clinical risk.

    Why are patient-reported measures important for studying inequity? Conventional indicators may record procedures, complications and clinical outcomes without showing whether patients were respected, listened to or involved in decisions. Patient-reported experience measures make these experiences visible and allow health systems to identify, compare and monitor inequities in the quality of care.

    Explore the full flagship publication page →

    Cite: Malhotra, N., Jevitt, C. M., Stol, K., Phillips-Beck, W., Vebam, S., & the RESPCCT Study Team. (2024). Weight-based disparities in perinatal care: Quantitative findings of respect, autonomy, mistreatment, and body mass index in a national Canadian survey. BMC Pregnancy and Childbirth, 24, 737. https://doi.org/10.1186/s12884-024-06928-8

Methods and Research Contribution

This research programme combines applied econometrics, national survey analysis, patient-reported experience measures and psychometric methods to study health-system performance and inequity. The analyses examine how experiences of care vary across population groups, provinces, provider models and care settings.

A central contribution of the work is to treat respect, autonomy, communication, compassion, consent, mistreatment and timely access as measurable dimensions of healthcare quality. These outcomes complement conventional indicators such as clinical results, utilization and service availability.

The programme also develops and applies measurement tools that can support health-services research, policy evaluation, professional education and quality-improvement initiatives.

II. Perinatal Patient Experience Research (U.S.)

These studies extend the patient-experience and measurement programme to maternity care in the United States. They examine respect, autonomy, mistreatment, coercion, non-consent, provider type, and place of birth as measurable dimensions of childbirth-care quality and health equity.

Paper 3

Examining Respect, Autonomy and Mistreatment in Childbirth in the United States: Do provider type and place of birth matter?

This study examines how childbirth-care experiences differ across provider type and place of birth in the United States. It uses patient-reported measures of autonomy, respect, and mistreatment to study how care settings and models of care are associated with people’s experiences during childbirth.

Research Relevance

  • Patient experience: Uses measures of autonomy, respect, and mistreatment to examine differences in childbirth care.
  • Care setting: Compares patient experiences across provider types and places of birth.
  • Measurement contribution: Reinforces the broader research finding that respectful care, autonomy, and mistreatment can be measured as dimensions of healthcare quality.

Cite: Niles, P. M., Goode, K., Malhotra, N., Stoll, K., Strauss, N., Lyndon, A., & Vedam, S. (2023). Examining respect, autonomy, and mistreatment in childbirth in the US: Do provider type and place of birth matter? Reproductive Health, 20, Article 67. https://doi.org/10.1186/s12978-023-01584-1

Paper 4

Coercion and Non-Consent During Birth and Newborn Care in the United States: Measuring autonomy, consent, and inequities in perinatal care

This paper examines reports of coercion and non-consent during birth and newborn care in the United States. It contributes to the broader patient-experience literature by documenting how consent, autonomy, and respectful care can be studied using patient-reported survey evidence.

Research Relevance

  • Consent and autonomy: Examines non-consented procedures and coercion during birth and newborn care.
  • Health equity: Documents inequities in reported coercion and non-consent across patient groups.
  • Policy relevance: Shows why consent and autonomy should be treated as essential components of respectful maternity care and healthcare quality.

Cite: Logan, R. G., McLemore, M. R., Julian, Z., Stoll, K., Malhotra, N., GVtM Steering Council, & Vedam, S. (2022). Coercion and non-consent during birth and newborn care in the United States. Birth, 49(4), 749–762. https://doi.org/10.1111/birt.12641

III. Canadian Health Systems Research

These current projects use Canadian Community Health Survey data to examine primary-care attachment, waiting times, usual sources of care and population-level inequities across Canadian provinces.

Current Project 1 · Primary-Care Access

Primary-Care Access Across Canadian Provinces: Who has a regular healthcare provider, and where are the largest gaps?

How does access to a regular healthcare provider vary across Canadian provinces?

Canadian Community Health Survey data show persistent provincial differences in access to a regular healthcare provider. Ontario remained close to or above 90% during the study period, while Quebec consistently reported the lowest attachment levels. Alberta recorded the largest improvement, rising from approximately 80.5% in 2015 to about 89% in 2022, while British Columbia remained comparatively stable.

Does universal healthcare coverage ensure equal access to primary care?

Universal insurance coverage does not necessarily produce equal attachment to primary care. Provincial differences may reflect variation in workforce availability, models of primary-care delivery, population needs and the organization of provincial health systems.

Why is regular-provider access an important health-system indicator?

Access to a regular provider is an important measure of continuity and coordination. People without an established source of care may rely more heavily on walk-in clinics, urgent-care services or emergency departments, making preventive care, referrals and chronic-disease management more fragmented.

Provincial trends in the percentage of people reporting access to a regular primary healthcare provider in Canada from 2015 to 2022
Percentage of respondents reporting access to a regular primary healthcare provider across selected Canadian provinces, 2015–2022.

The ongoing analysis by Dr. Malhotra examines whether primary care attachment in Canada differs by age, income, education, immigration status and other social characteristics, and whether these disparities are consistent across provinces.

Data and analysis: Canadian Community Health Survey data are used to compare access to a regular healthcare provider across provinces, years and population groups. The project examines both overall provincial trends and the social distribution of primary-care attachment.

Current Project 2 · Timely Access and Usual Care

Wait Times and Place of Usual Care in Canada: How long do patients wait, and where do they seek care?

How do waiting times to see a healthcare provider differ across Canadian provinces?

The distribution of same-day, next-day and longer waits varies substantially across provinces. These differences provide evidence about timely access and about the pathways patients follow when regular primary care is not readily available.

Why does the distribution of waiting times matter?

A single average can conceal important differences within a province. A relatively large share of patients may receive same-day care while another group waits several weeks or more. Examining the full distribution shows how timely access is shared across the population rather than reducing the experience to one summary number.

How can longer waits affect where patients seek care?

Difficulty obtaining timely primary care may redirect patients to walk-in clinics, urgent-care centres, emergency departments or other episodic settings. These pathways can weaken continuity and place additional pressure on other parts of the healthcare system.

Distribution of reported waiting times to see a healthcare provider across Canadian provinces
Distribution of reported waiting times for care requiring immediate attention across selected Canadian provinces.

What does a patient’s usual source of care reveal about healthcare access?

A usual source of care indicates whether a patient has an established entry point into the health system. Reliance on episodic or emergency settings may signal barriers to continuous, coordinated and relationship-based primary care.

Data and analysis: Canadian Community Health Survey data are used to examine waiting-time categories, usual sources of care and population-level inequities. The analysis considers not only whether care was obtained, but also how quickly it was received and whether it occurred through an established source of care.

This research extends Dr. Malhotra’s broader health equity programme by applying population-level survey analysis and applied econometric methods to questions of health-system performance. The analysis examines how care is distributed across provinces, age groups, income, education, immigration status and other social characteristics, and whether patients have timely, continuous and relationship-based access to care.

IV. Related Canadian Research

Related Canadian Health Equity Study

Domestic Violence and Probable Brain Injury in Canadian South Asian Women: An exploratory survey of violence, injury, and unmet health needs

This study examines domestic violence and probable brain injury among Canadian South Asian women using culturally adapted survey methods. It connects health equity research with violence, injury, immigrant health, and barriers to care.

Research Relevance

  • Canadian health equity: Focuses on South Asian women in Canada and the health consequences of violence.
  • Unmet health needs: Highlights how domestic violence and probable brain injury may remain under-recognized in health and social service systems.
  • Community relevance: Uses culturally adapted survey methods to better understand experiences in immigrant and racialized communities.

Cite: Dhaliwal, A., Adhikary, S., Malhotra, N., & von Donkelaar, P. (2026). Characterizing domestic violence and probable brain injury in Canadian South Asian women: An exploratory survey. Women’s Health Reports, 7. https://doi.org/10.1177/2634646426144506

External PREM Resource: CIHI — Patient Experience in Canadian Hospitals
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