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\begin{document}

\title{Creating an equitable evidence base for quality and safety in remote
antenatal care}



\author[1]{Karolina Kuberska}%
\author[1]{Francesca Dakin}%
\author[2]{Mary Dixon-Woods}%
\author[3]{Christine Ekechi}%
\author[2]{Lisa Hinton}%
\affil[1]{University of Cambridge School of Clinical Medicine}%
\affil[2]{University of Cambridge}%
\affil[3]{Imperial College Healthcare NHS Trust}%


\vspace{-1em}



  
  \date{May 26, 2024}


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Commentary

Creating an equitable evidence base for quality and safety in remote
antenatal care

Karolina Kuberska\textsuperscript{1} (PhD,
https://orcid.org/0000-0002-9610-1863)

Francesca Dakin\textsuperscript{1} (MPhil, https://orcid.org/0000-
0000-0002-4105-4617)

Mary Dixon-Woods\textsuperscript{1} (DPhil;
https://orcid.org/0000-0002-5915-0041)

Christine Ekechi\textsuperscript{2,3} (MD)

Lisa Hinton\textsuperscript{1} (PhD,
https://orcid.org/0000-0002-6082-3151)

\textsuperscript{1}THIS Institute (The Healthcare Improvement Studies
Institute), University of Cambridge, Cambridge Biomedical Campus,
Clifford Allbutt Building, Cambridge CB2 0AH, UK

\textsuperscript{2}Consultant Obstetrician \& Gynaecologist, Queen
Charlotte's \& Chelsea Hospital, Imperial College Healthcare NHS Trust,
London, UK

\textsuperscript{3}Co-Chair, Race Equality Taskforce, The Royal College
of Obstetricians \& Gynaecologists, UK

\textbf{Correspondence to:} Lisa Hinton, THIS Institute, University of
Cambridge, Cambridge Biomedical Campus, Clifford Allbutt Building,
Cambridge CB2 0AH, UK.

lisa.hinton@thisinstitute.cam.ac.uk; 01223 331573

\textbf{Shortened title:} Equitable evidence base for remote antenatal
care

Commentary

Creating an equitable evidence base for quality and safety in remote
antenatal care

By international standards, pregnancy and childbirth are very safe in
the UK. However, when poor pregnancy and birth outcomes happen, they are
spread unevenly across the population. Recent reports from confidential
enquiries into maternal deaths and morbidity in the UK and Ireland
(MBRRACE-UK) reveal a disturbing pattern of increasing inequality.(1)
Poor outcomes are associated with ethnicity and adverse socio-economic
circumstances. Black women (including African, Caribbean and other Black
ethnic backgrounds) are five times more likely to die as a result of
complications in their pregnancy than White women.(1) For women of mixed
ethnicity, the risk relative to White women is threefold, and for Asian
women it is double. Women with multiple disadvantages, such as a mental
health diagnosis or experience of domestic abuse, are also
over-represented among the women who die.(1)

One of the striking features of the current COVID-19 pandemic is its
amplification of these and other inequalities. Mortality rates from the
coronavirus are highest for Black and Asian ethnic groups. Excess deaths
are 4.3 times higher for the Black African population, 2.5 times higher
for the Black Caribbean population and as much as 7.3 times higher for
the other Black ethnicities than expected for this population under
non-pandemic conditions.(2) Pregnancy and childbirth do not seem to
escape these effects. The first study to estimate the incidence of
admission to hospital with COVID-19 in pregnancy showed the highest
proportion of women admitted to hospital were from Black or minority
ethnic groups (56\%).(3) While the exact reasons are not yet well
understood, contributing factors include a higher risk of infection, a
higher risk of severe disease, or both -- among others.(3)

In addressing the challenges of inequality in maternity care, a
high-quality evidence-base is essential. However, a well-founded
conception of what quality of evidence means is also critical. It is not
enough that evidence be technically and scientifically robust, it must
also be equitable and inclusive. The need for such an evidence-base is
well illustrated by one of the major responses to the imperatives of the
pandemic: the rapid introduction of remote care pathways. Without an
inclusive body of evidence, there are real possibilities that remote
care might compound the problems of marginalisation, disadvantage, and
clinical risk for women in some of the most at-risk groups.

Antenatal care plays a key role in supporting women and their families
during pregnancy and in improving the likelihood of optimal birth
outcomes. It warrants particular scrutiny in this respect, given that
access challenges are already experienced by some women of minority
ethnic backgrounds and those who are socio-economically
disadvantaged.(1) An audit of referral delays in antenatal bookings, for
example, highlighted inadequate care caused by language barriers and
poor understanding of maternity services in the UK, and perceptions of
pregnancy care services as a system of surveillance rather than
support.(4) The rapid shift to remote antenatal care was an
understandable -- and rational -- response to the imperatives of the
pandemic. This included the need to minimise risks of virus transmission
and the need to address the complexity associated with suspected or
confirmed COVID-19 infection in pregnant women.(5) But the evidence-base
for remote antenatal care remains weak. Though some studies examining
use of remote technologies in antenatal care pathways have shown
promising results in terms of safety and experience,(6, 7) they are not
conclusive. Some have assessed remote monitoring of isolated components
of maternity care (e.g. self-monitored measurements of blood pressure or
glucose levels), rather than the whole care pathway.(8, 9) Other studies
have investigated hybrid antenatal care pathways that include, but are
not exclusively formed of, components of remote care. (6) How easily
these findings can be extrapolated into scenarios where most or all
antenatal care is being provided remotely is not clear.

A perhaps less obvious problem, but one that is highly consequential for
understanding and addressing inequalities, is that the participants in
these studies tend not to represent groups who experience, on average,
worse maternity outcomes.(1) A significant proportion of the evidence on
the effectiveness and safety of remote antenatal monitoring comes from
studies with homogeneous populations. Women of minority ethnic
backgrounds, refugees, people experiencing homelessness, people with
poor fluency in English, or those experiencing domestic abuse are rarely
represented. Studies assessing \emph{satisfaction} with hybrid models,
for example, often include only participants who selected this care
pathway when offered the choice. The participants tend to be more
comfortable advocating for themselves, already have children, be white,
have middle to high incomes, and be relatively highly educated.(10)

The exclusion of less privileged voices from these studies reflects a
more widespread and longstanding ``orthodoxy of sameness'' in health
research.(11) Caroline Criado Perez, in her 2019 book ``Invisible
Women'', exposed the enduring male default bias in medical research.
Clinical trials are especially prone to collecting data mostly from men
and extrapolating it on the general population, which results in serious
data gaps in many aspects of women's health. Evidence from maternity
care research, while obviously not suffering from lack of data on women
in general, may be vulnerable to similarly serious gaps when it comes to
data on ethnicity, race and socio-economic status.

The current lacunae in the evidence for antenatal care matter: it is not
safe to assume that all pregnant women have the same needs, preferences
and expectations of care. Anticipating potential unintended consequences
based on what is already known leaves systems better equipped both to
mitigate negative impacts, and to monitor the consequences for the
groups affected.(12) For example, when it comes to introducing
telemedicine into antenatal care pathways, it is reasonable to make
provisions for instances of technology failures (poor internet
connection, insufficient mobile data), disabilities that make it
difficult to use the telephone (deafness or being hard-of-hearing), or
social factors (digital exclusion or experience of domestic abuse). With
these perspectives missing, we simply do not have a good understanding
of how well remote care can be optimised for those whose experiences are
not usually included in research.

The gaps in data on race and ethnicity in health research are especially
problematic for who is represented and included, and what that then
means for how services are designed, for whom, and with what
consequences. Addressing these gaps is hindered by the lack of clarity
and understanding around the categories of race and ethnicity and how
the definitions (and differences) assigned to them manifest in everyday
interactions, research, and policy and practice, depending on context.
For instance, in the UK, the categories of ``race'' (broadly defined by
the symbolic colour of a person's skin or physical appearance) and
``ethnicity'' (reflecting a historical-cultural or national group a
person may identify with) are often merged in a hybrid category of
``ethnicity'', which is reductionist and conceals as much as it reveals.
For instance, a category such as ``Black Caribbean'' uses a symbolic
skin colour and an ethnically non-homogenous politico-geographic region
to indicate a supranational identity that limits insight into
potentially highly variable help-seeking behaviours, patterns of access,
and quality of care. Thus, even though we know that maternal mortality
figures show five times more Black women die than their White
counterparts, the Office of National Statistics (ONS) categories we have
available to us do not give us the rich detail to understand why this
occurs.

The broad ONS categories may obscure important ethnic differences that
could illuminate our understanding of maternal mortality and morbidity
within certain groups. A Black British woman, born in the UK but with a
Nigerian ethnic heritage, might not encounter barriers in navigating the
health system for her pregnancy. Accustomed to the UK system of
healthcare, she might readily engage with antenatal care even when
delivered in a remote format. In contrast, a Black Sudanese woman,
recently arrived in the UK, might encounter significant barriers in
accessing the care she needs. Her cultural heritage may place greater
significance on the advice and support of older women in the community
rather than from healthcare professionals. She would therefore have
lower expectations of the antenatal care system. Both of these women are
currently categorised as ``Black African.'' Their different ethnic
backgrounds, however, potentially influence their belief systems and
behaviours, and may affect their individual risks of poor maternal
outcomes.

Problematic as racial and ethnic identities are, capturing these
categories as research data is important. Race and ethnicity may be
social constructs, but they are real in their consequences, powerfully
impacting healthcare access and outcomes in profound ways.(1)
Understanding the consequences of race and ethnicity for women accessing
healthcare, coupled with a recognition of the significance of
socio-economic determinants of health, can help create pathways that
address patients' needs in more nuanced and socio-culturally sensitive
ways. Without granular data on who is at greatest risk of severe
maternal morbidity and mortality, we are likely to entrench racialised
stereotypes without reducing inequalities. It is important to go beyond
simple dichotomies (e.g. that imply White and ``Other''): we must ask
ourselves challenging questions about how to ensure authentic inclusion,
the definitions we are using to construct the world we are seeking to
describe, and what we are seeking to improve for whom.

Given that COVID-19 does not impact all population subgroups in the same
way, an understanding of what good remote antenatal care looks like is
urgently needed to help shape pathways that offer appropriate support
for every pregnant woman. At the same time, as sound evaluation of
models of antenatal care -- which had to be introduced very rapidly --
is urgently needed, such evaluation must be highly attentive to the
diversity of experiences and needs. Remote care may be safe for large
sections of the pregnant population, but may also create unintended
barriers for some. Creating equitable antenatal care pathways requires
intentional and sustained effort not only to prevent new harms but also
to reduce existing institutional racism and structural inequalities in
healthcare. Once the pandemic passes, antenatal care is unlikely to
return to pre-pandemic models in its entirety. We have an opportunity to
capture what has worked well and to mobilise that learning for the
benefit of pregnant women. But it is also vital that the evidence we
create is equitable.

\textbf{Acknowledgements}

We thank Professor Graham Martin for commenting on earlier versions of
the draft.

\textbf{Disclosure of interest}

KK, FD, MDW and LH declare no competing interests. CE is the Director of
Early Pregnancy Plus, Indak LTD, Board Trustee of The Eve Appeal
Charity, Advisory Board Member of Baby Lifeline Charity, she has
received speaking fees from Harvard Medical School, The Wing, Visa, and
Diageo, outside the submitted work.

\textbf{Contribution to authorship}

KK and LH developed the idea for and led the drafting of the commentary.
FD assisted in research and contributed to the drafting of the
manuscript. CE and MDW contributed to the drafting of the manuscript.

\textbf{Details of ethics approval}

Ethics approval was not required for this Commentary.

\textbf{Funding}

KK, FD, MDW and LH are supported by the Health Foundation's grant to the
University of Cambridge for The Healthcare Improvement Studies (THIS)
Institute. THIS Institute is supported by the Health Foundation -- an
independent charity committed to bringing about better health and health
care for people in the UK.

1. Knight M, Bunch K, Tuffnell D, Shakespeare J, Kotnis R, Kenyon S, et
al. Saving Lives, Improving Mothers' Care Lessons learned to inform
maternity care from the UK and Ireland Confidential Enquiries into
Maternal Deaths and Morbidity 2015-17. MBRRACE-UK; 2019.

2. Razaq A, Harrison D, Karunanithi S, Barr B, Asaria M, Routen A, et
al. BAME COVID-19 Deaths - what do we know? Rapid data and evidence
review: 'hidden in plain sight'. Oxford: The Centre for Evidence-Based
Research; 2020.

3. Knight M, Bunch K, Vousden N, Morris E, Simpson N, Gale C, et al.
Characteristics and outcomes of pregnant women admitted to hospital with
confirmed SARS-CoV-2 infection in UK: national population based cohort
study. BMJ. 2020;369:m2107.

4. McDonald H, Moren C, Scarlett J. Health inequalities in timely
antenatal care: audit of pre- and post-referral delays in antenatal
bookings in London 2015-16. J Public Health (Oxf). 2020.

5. Knight M, Bunch K, Cairns A, al. e. Saving Lives, Improving Mothers'
Care Rapid Report: Learning from SARS-CoV-2-related and associated
maternal deaths in the UK March -- May 2020. Oxford: National Perinatal
Epidemiology Unit, University of Oxford; 2020. Report No.:
978-0-9931267-8-9.

6. Alves DS, Times VC, da Silva EMA, Melo PSA, Novaes MA. Advances in
obstetric telemonitoring: a systematic review. Int J Med Inform.
2020;134:104004.

7. van den Heuvel JF, Groenhof TK, Veerbeek JH, van Solinge WW, Lely AT,
Franx A, et al. eHealth as the Next-Generation Perinatal Care: An
Overview of the Literature. J Med Internet Res. 2018;20(6):e202.

8. Hinton L, Tucker KL, Greenfield SM, Hodgkinson JA, Mackillop L,
McCourt C, et al. Blood pressure self-monitoring in pregnancy (BuMP)
feasibility study; a qualitative analysis of women's experiences of
self-monitoring. BMC Pregnancy Childbirth. 2017;17(1):427.

9. Ming WK, Mackillop LH, Farmer AJ, Loerup L, Bartlett K, Levy JC, et
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Review and Meta-Analysis. J Med Internet Res. 2016;18(11):e290.

10. Butler Tobah YS, LeBlanc A, Branda ME, Inselman JW, Morris MA,
Ridgeway JL, et al. Randomized comparison of a reduced-visit prenatal
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2019;221(6):638 e1- e8.

11. Healy B. Challenging Sameness: Women in Clinical Trials. Bethesda,
MD: National Institutes of Health, Office of Research on Women's Health;
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12. Bonell C, Jamal F, Melendez-Torres GJ, Cummins S. 'Dark logic':
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