Combining big data with lived experience to improve equity in pregnancy care: A Q&A with Dr. Hilary Brown
A new report documents the pregnancy outcomes and health care experiences of people with disabilities in Ontario. Lead author Dr. Hilary Brown sat down with us to explore why this work is necessary to improve equity in pregnancy care.
Q: Why did you set out to study disability in pregnancy?
A: Pregnancy – and reproductive health more broadly – is an area that has been overlooked in research and in the health care of people with disabilities. Historical eugenic practices like involuntary sterilization of people with disabilities have led to societal assumptions that pregnancy is uncommon in this population.
However, one of the first studies we did on this topic suggested that pregnancy rates have increased in Ontario over the last 20 years, and in fact, one in eight pregnancies in the province are to a person with a physical, sensory, or developmental disability. So, we wanted to work with our community partners to understand pregnancy outcomes and healthcare experiences in this group to ultimately try to make accessibility and inclusion a priority in pregnancy care.
Q: This report is unique in that it combines big data with lived experience. Why was it important to you to include interviews with people with disabilities?
A: Big data tell us important stories about health disparities. In our study, for example, we found people with disabilities were more likely to experience physical and mental health complications in pregnancy and postpartum compared to those without disabilities. These disparities tell us that there is a gap or an inequity that needs to be addressed.
However, big data are limited in terms of their ability to tell us why these disparities happen and what we can do to address them.
Interviewing people with disabilities was important in terms of understanding individuals’ pregnancy care experiences –barriers to care and the things that worked well. We also specifically asked people with disabilities about their recommendations to improve pregnancy care, so these interviews informed a lot of our key messages for policy and practice in our report.
Along with interviewing people with disabilities, we also emphasized lived experience by working with peer researchers with disabilities to collect and analyze our interview data and with an advisory committee that included people with disabilities to interpret our findings. These activities were important to recognize the value of lived experience and make sure that our research was accurate and relevant.
Q: What did disabled people tell you about their experiences with pregnancy care?
A: We heard really important stories, including some good experiences and some difficult ones.
We heard some stories of people who had supportive pregnancy care providers who ensured that their care was comprehensive and coordinated, addressed their accessibility-related needs, and treated them with respect.
However, we also heard about very difficult experiences. We heard lots of stories about pregnancy care spaces that were physically inaccessible to people who used mobility devices. We heard about communication barriers, including from Deaf participants who reported that American Sign Language interpreters were not always available in critical moments like during labour or on the postpartum recovery unit.
We talked to people whose pregnancy care providers showed stigmatizing and ableist attitudes, including providers who assumed pregnant people with disabilities would want to have an abortion, or who made judgments about their future parenting capabilities.
We also heard about experiences of fragmented services and a lack of coordination and communication across different providers, like between obstetricians and other medical specialists, or between healthcare and social service providers.
People also told us about having questions about disability and pregnancy that their providers just could not answer because of a lack of available resources or training. These interviews pointed to areas for improvement in the pregnancy care system for people with disabilities in Ontario.
Q: What did you hear from healthcare providers and other decision makers?
A: We heard some examples of innovation – healthcare providers who found creative ways to use their available resources to make pregnancy care more accessible and coordinated for people with disabilities.
But mostly we heard about things that need to change. Healthcare providers and decision makers told us about how a historical lack of data on this topic has hampered movement in policy and practice to create more accessible pregnancy care.
Healthcare providers in particular told us about how Ontario’s fee-for-service physician remuneration system – which reimburses physicians for appointments of a set length (e.g., 10 minutes) – makes it difficult for them to provide comprehensive, accessible care, which might take more time. They also told us about a lack of funding to make their clinics and equipment more accessible.
And a major barrier we heard from almost everyone we spoke to was a lack of training and education related to disability. We heard many times that disability, particularly in relation to reproductive health, is not covered in medical, midwifery, or nursing curricula. This meant that healthcare providers felt unprepared to care for their pregnant patients with disabilities.
Q: What do you think are the next steps to creating a more accessible pregnancy care system?
A: I would focus on three big take-home points.
At a policy level, we need to build in more flexibility into our healthcare system in terms of how pregnancy care is organized and funded. Ontario recently introduced incentive billing codes to support primary care providers with patients with developmental disabilities. A similar structure could be put into place to facilitate pregnancy care visits for people with disabilities and other groups that might require more comprehensive care.
At a service provider level, we need to better educate health professionals, including physicians, midwives, and nurses, about disability. In the United States, medical schools are developing disability competencies which outline the basic knowledge, skills, and attitudes that physicians should have in order to provide effective care to people with disabilities. Canadian health professional programs need similar standards. These could be integrated into the work that is currently being done to improve provider training related to equity, diversity, and inclusion – which now focuses on important topics addressing issues like racism but has largely excluded topics related to ableism.
Finally, at a scientific level, we need to continue to focus on building our capacity to monitor pregnant people’s needs and outcomes at a population level. So, we need to focus on linkages of health administrative data with social services data, surveys, and self-reported disability data from medical records, to make sure we can effectively measure the impacts of policy and practice changes.
Cutting across all of these steps is the need to partner with people with disabilities to make sure that policy and practice changes meet their needs. Ultimately, we need pregnancy care services and resources that are accessible, respectful, equitable, and inclusive for people with disabilities – and I think that starts with these three big system, provider, and scientific level changes so that we have the capacity to provide better care.
Read the research: Equity and inclusion in pregnancy care: report on the pregnancy outcomes and health care experiences of people with disabilities in Ontario
Join us for a webinar on June 18: Equity and inclusion in pregnancy care – webinar registration
Dr. Hilary Brown is an Adjunct Scientist with the Mental Health & Addictions Program at ICES, and an Associate Professor at the University of Toronto in the Department of Health & Society and the Dalla Lana School of Public Health. She is cross-appointed to the Temerty Faculty of Medicine’s Department of Psychiatry and is an Adjunct Scientist at Women’s College Hospital and ICES. Dr. Brown holds a Tier 2 Canada Research Chair in Disability & Reproductive Health. Her research program uses epidemiologic and qualitative methods to examine maternal and child health and mental health across the life course, with a particular focus on populations with disabilities and chronic disease, health equity, and the social determinants of health.