MuM-PreDICT[1] – the importance of research studies in the healthcare system

By Trushvi Lakshman

‘My name is Trushvi and in February 2023, I was able to observe Professor Nirantharakumar for my work experience, which was my first encounter with MuM-PreDICT. Throughout the course of my work experience, I was able to talk to other members of the project and observe meetings surrounding this project. To reflect on the skills I’ve gained, I decided to write this article for my school’s Med-Soc newsletter to consolidate the information I learnt and let my fellow peers know about the project. My friend Harshitha drew some artwork and provided some information to accompany my article. I hope you enjoy reading!’

Over half-term, I was very fortunate to obtain work experience with Professor Krishnarajah Nirantharakumar and was able to observe him and his work throughout the week. My work experience took place at the University of Birmingham,both in person and online. One of the numerous projects he has been working on is MuM-PreDICT, which is the main focus of my article.
What is MuM-PreDICT?
MuM-PreDICT, a collaborative research project between the University of Birmingham and other universities and health services across four countries in the United Kingdom, was established in September 2021 as a 3 year, £3 million grant project thanks to a previous small project
which MuM-PreDICT led on from. Other universities involved in the project aside from the University of
Birmingham include the University of Manchester, Queen’s University Belfast, University of Aberdeen,
University of St Andrews and many more. NHS partners across the UK also contribute such as
Birmingham Women’s and Children’s NHS Foundation Trust.

This project can help improve maternal care for those who experience a multitude of different mental
health issues. Common issues aligned with pregnancy are postnatal depression and antenatal
depression. 1 in 10 women undergo these problems during their pregnancy or up to a year after their
pregnancy. [2] Causing them to feel a bit down, tearful or anxious in the first week after giving birth. This is in fact often called the “baby blues” due to how much it occurs. – Harshitha Ramesh 12CL
The aim of this project is to study the pharmaco-epidemiology of multi-morbidity, investigate and conduct imperative research in hopes to improve maternal care for those who are pregnant with two or more long term health conditions such as asthma, depression, anxiety as well as others. [3]. The data is obtained from various sources for each nation in the UK such as CPRD for England, Scotland Wales and Northern Island and SAIL for Wales.
Throughout the week, I was able to attend online meetings surrounding the project and observe the
colossal amount of work that goes into creating this project, from writing umbrella reviews to organising
interviews and focus groups with pregnant people to discuss the optimum care pathway. As well as this, I
was also able to talk to many staff members at the Department of Applied Health Research about their
experience with this research project, as well as many other projects they have been involved in, as well as their personal experiences with the health data science field, which I found really beneficial.
How does this study impact the healthcare system?
Pregnant people who are living with two or more long-term health conditions can often struggle with finding a care pathway that benefits both them and their baby. Some people who use medication for their long-term condition may have to abandon their medication if it is harmful for their baby, which could lead to severe health issues in the future. By collating data over a long period of time from sources such as hospital health records, doctors and clinicians can provide a more comfortable maternal care experience in the future for mothers and their offspring. [4]

Drawing by Harshitha Ramesh 12CL

A massive thank you to Professor Nirantharakumar, Dr Anuradhaa Subramanian, Dr Francesca Crowe,
Dr Katherine Phillips, Dr Megha Singh and Fazla for taking the time out of their busy schedules to
welcome me and talk about this project with them. I am also grateful to the Department of Applied Health Research at the University of Birmingham for their generosity and support.
[1] –
[2] –
[3] – Epidemiology of pre-existing multimorbidity in pregnant women in the UK in 2018: a
population-based cross-sectional study | BMC Pregnancy and Childbirth.

Creating and Using Health Data

By Neil Cockburn (This is Part one of the blog series on Creating phenomes)

Capturing data about our health has always been hard work.

Some of the earliest health statistics in England (before it was even the UK) were London’s Bills of Mortality beginning in 1603. Every week the “Worshipful Company of Parish Clerks” published on one side of paper the names of the dead, and on the other counts of the causes of death as determined by “searchers”, usually elderly women who were recipients of parish money.

These women may have now been replaced by trained doctors, and the Worshipful Company of Parish Clerks by the Office of National Statistics, but it remains true both 400 years ago and now that “Health statistics represent people with the tears wiped off

L0030701 London’s dreadful visitation …, 1665 Credit: Wellcome Library, London. Wellcome Images “The Diseases and Casualties this Week”, London 39, from 12th to 19th September, 1665 – recto London’s dreadful visitation: or, a collection of all the Bills of Mortality for this present year… Published: 1665 Copyrighted work available under Creative Commons by-nc 2.0 UK, see

Collecting health data is crucial to all health systems. It allows us to:

  • track the needs for health services
  • the spread of infectious disease
  • discover causes and cures of disease
  • to ensure suffering due to ill health is counted and not ignored.

Health data is created at every appointment and consultation, as doctors, nurses, midwives, dentists and allied health professionals such as physiotherapists  record what they have seen and heard, what they have prescribed and what they have recommended.

This information is essential to provide good care, and often needs to be communicated to other people, such as hospitals writing to GPs about their patients. It can also be misused, such as the plan in 2018 for the NHS to share patient information to help the Home Office find migrants and asylum seekers. This was dropped after protests by privacy campaigners.

Some sensitive data is protected even further. Sexually transmitted illnesses treated at hospital clinics are not reported to GPs, to ensure the affected person’s  privacy and to make sure they are not  put off seeking care for other illnesses. There are also legal restrictions around the use of data from fertility treatment which make it difficult for researchers to include this issue in a study such as MuM-PreDiCT.

We have more health data than ever before, and it is far easier to collect than London’s Bills of Mortality, but it still takes a great deal of work to prepare the data for researchers to use. By the time health data comes to the MuM-PreDiCT team, information which could easily be used to identify an individual has been removed.

 MuM-PreDiCT uses many data sources such as the real-world patient data described above. Research on this data is a secondary use of data collected primarily to provide care, as opposed to data collected when new treatments are being developed and tested. Datasets range from big national datastores to bespoke city-based studies and include:

We hope this blog has been useful in outlining some of the health data used by researchers. This is the first blog in a four-part series about health data, and in the next blog we will discuss how individual health data is kept private and confidential when being used for research.

Book review: We’ve got this: essays by disabled parents

By Ing Lee

A book about people like me becoming parents

When I first saw the news on a disabled activist’s social media account, that this book was coming in February 2023, I was beyond excited. It is a collection of stories by disabled parents from the UK, USA, Canada and Australia. It includes accounts from parents with physical or intellectual disability, chronic illness, sensory impairment and who are neurodivergent.

I live with a neurological condition and now mobilise with a stick. Because of my reduced mobility, I did not feel confident that I could be a mother. What if I trip and fall on the baby? What if I cannot run after the baby outdoors? I started joining forums and support groups for parents with disabilities and read about the adaptions they make, for example, to the baby cot, baby carrier or pram, to enable them to carry out childcare activities. People often find comfort reading stories of others with similar health conditions. As a support group member for my condition told me, it makes one feel less alone.

Social disability model vs biomedical model

In medical school, clinicians are taught the social disability model versus the biomedical model. We are familiar with the concept that it is society and the environment’s lack of accommodation (e.g. not providing step free access) that disables and stops a person with disability from participating in society and fulfilling their potential; whilst in the biomedical model, the problem lies with the individual which needs to be fixed.1 The two concepts do not have to be mutually exclusive, and providing appropriate medical treatment can also be a form of social accommodation.1

Ableism and medical communication

However, ‘ableism’ was something new that I learnt from people with lived experience through MuM-PreDiCT’s research work, and from disabled activists that I follow. It is a system that values able bodied people.1 This book provides context to how this was experienced. A key theme is how communication needs to be sensitive, for example when parents with disabilities go for antenatal scans, or take their new baby for the hearing test screening.

Medical communication training taught us to soften the blow of a bad medical news with some prewarning, for example, ‘I am sorry to tell you that…’. However, in the context of announcing the screening finding that the baby has the same condition as the parents, if this was framed as  bad news, or if the clinician implies that the parent may want to consider termination, then this is sending a signal to the parent that their lives are not valuable because of their condition or disability. Many disabled people, including myself, may have been / still on a long journey to reach self-acceptance, overcoming what the disabled activist coins as ‘internalised ableism’. Therefore, such comments, even if well-intentioned, can be upsetting.

The book also talks about when the relationship between parents and health and social care professionals can break down, such as when parents with disabilities are judged to be incapable of caring for a baby. Health and social care professionals are trained to provide honest information to enable people to make informed decisions, but such conversation has to be very sensitively handled.

In recent years, the medical curriculum has got better at training clinicians to be culturally sensitive and using inclusive language when providing care to people from the LGBTQ+ community. Perhaps it is time that language and care that is inclusive to disabled people should also be emphasised in medical training.

Proud to be disabled

I cried through some of the stories. Even though I am not a parent, this was a book about people like me, it validated some of my thoughts and feelings. It shared how these parents are proud of their disability and overcame many challenges to bring up their beautiful children. There were plenty of stories that were positive and uplifting. In one story, an entire school chose to learn sign language as a second language when they had new students who were children of deaf adults. If you are interested in gaining insights into the experience of disabled parents, do give this book a read!


1. Hunt J. Making space for disability studies within a structurally competent medical curriculum: reflections on long Covid. Medical Humanities 2023;49:105-116.

 A winning end to 2022

Compiled by Rachel Plachcinski, Megha Singh and Ing Lee

Happy new year!

 The MuM-PreDiCT team is starting 2023 on a real high as in December we found out that we were Health Data Research UK’s Team of the Year!

HDR UK awards prizes for excellence in health data research and we were commended for our innovative patient and public involvement activities, inclusive leadership and involvement of early career researchers.

We were also shortlisted for the Patient and Public Involvement and Engagement award for “purposeful involvement and deliberately broad PPIE group, including people with HIV and from the LGBTQ+ community. Of note is the team’s novel approach of ‘deep dives’ with underserved communities to provide a convenient and comfortable space for participation.” MuM-PreDiCT PPI lead Rachel Plachcinski added: “It’s great to be nominated for this award, and to be shortlisted alongside such amazing projects as Gut Reaction (who won).”

Members of the MuM-PreDiCT team pictured at our first face to face meeting earlier this year

The people behind our public involvement and engagement, from left, Rachel Plachcinski, PPI lead and co-investigator; Megha Singh, Programme manager; Sally Darby, PPI group member; Ngawai Moss, PPI co-investigator; Ing Lee, Clinical Research Fellow.

HDR UK also highlighted the hidden roles in research, with awards to practices and people who have had an impact on research delivery. Congratulations on this go to Rachel, Ngawai and Megha, plus Yuangen Li, our fabulous finance lead, and Krishna Gokhale, Aditya Acharya and Alecsandrou Vitoc, our computer scientists behind the scenes.

Other achievements

Our first full year of work has seen lots of great work by team members. Early career researcher Stephanie Hanley got things off to a great start by winning funding to set up a Community of Practice for patient and public involvement in multimorbidity research. This was launched at a face to face meeting in Birmingham in November which was attended by researchers, PPI leads and patient and public representatives.

We’ve published three papers, with more in the pipeline:

Protocol for development and validation of postpartum cardiovascular disease (CVD) risk prediction model incorporating reproductive and pregnancy-related candidate predictors

Association of pregnancy complications/risk factors with the development of future long-term health conditions in women: overarching protocol for umbrella reviews

mmVAE: multimorbidity clustering using Relaxed Bernoulli β-Variational Autoencoders

Members of our team have given presentations at international conferences, including the Royal College of Obstetricians and Gynaecologists (RCOG) World Congress, British Maternal and Fetal Medicine Society (BMFMS), MacDonald Obstetric Medicine Society (MOMS), European Conference on Preconception Health and Care, the Inaugural Collaborative Research and Innovation Symposium, the MRC Midlands Early Career Researcher Meeting and the International Population Data Linkage Network (IPDLN).

Prizes were awarded to Amaya Azcoaga-Lorenzo for the best poster at the Inaugural Collaborative Research and Innovation Symposium NHS Fife and University of St Andrews, and to Anuradha Subramanian for the best oral presentation in the high risk pregnancy category at the RCOG World Congress.

And finally, here’s a collection of our MuM-PreDiCT conference posters:

RCOG World Congress 2022

University of St Andrews & NHS Fife Inaugural Collaborative Research and Innovation Symposium

British Maternal & Fetal Medicine & MacDonald Obstetric Medicine Society Joint Conference 2022

We’re looking forward to an exciting and productive 2023!


MuM-PreDiCT team members meet in person!

Compiled by Megha Singh and Ing Lee

After working together on Zoom for 2 years, the MuM-PreDiCT team finally met in person in June 2022 at the University of Birmingham! Team members came all the way from Wales, Scotland and Northern Ireland to meet together.

From left: Kate, Utkarsh, Dermot, Steph, Adeniyi, Kelly-Ann, Megha, Charles, Chris, Louise, Mohamed, Ngawai, Neil, Jonathan, Holly, Beck, Sharon, Amaya, Steven, Anu, Colin, Dilanthi, Krish, Buddhika, Gillian, Mairead, Natalia, Rachel, Ing and Krishna
Not leaving out those who joined remotely! On screen: Francesca, Zoe, Kelvin, Jemma, Richard, and Maria.
We had a series of presentations from team members, group discussions to plan our next steps and a cosy dinner social in the evening. This was followed by an Early Career Researcher’s workshop the next day.

Our team members shared what they enjoyed

From left: Rachel, Megha, Sally, Ngawai and Ing.

Sally (Women representative, England)

“I was inspired at the MuM-PreDiCT in person meeting. It was fantastic to be in a room surrounded by academics, researchers and medics, all of whom are passionate about improving maternity outcomes for women  with health conditions. It was really interesting to see the whole team at work and understand the role the patient and public involvement (PPI) group is playing in a much larger project.” 

Ngawai (Women representative, England)

“A fantastic part of the MuM-PreDiCT in person event was finally meeting people face to face who I have been working with for some years!! The energy amongst us meeting together was really uplifting and inspiring. It was also lovely to hear more informally about our interests and ideas when we were relaxed and enjoying ourselves afterwards

Kelly-Ann (Obstetrician, subspecialist in maternal & fetal medicine, England)
“Fantastic to meet my MuM-PreDiCT collaborators from around the UK. A chance to reflect on all the great work we have done over the last few years and plan for the future! Brilliant to meet our patient and public involvement (PPI) representatives in person and learn from their wealth of experience. The Early Career Researcher’s workshop was an excellent opportunity to present my work. I gained insightful, supportive and constructive multi-disciplinary feedback on my proposed project which has already helped shaped a grant application..”

Adeniyi (Medical statistician, Scotland)

“The in person meeting provided a unique opportunity of meeting various collaborators, sharing insightful thoughts and learning from one another. Memorable indeed.”

Amaya (General practitioner, Spain)

“It was a great to finally meet so many colleagues face to face. The meeting confirmed the fantastic team spirit that we have managed to create in MuM-PreDiCT. Thank you all!”

Mohamed (Health data scientist, Wales)

“Attending the first face to face meeting was a great opportunity to meet the other team members, discuss, and share knowledge and ideas. The meeting was an opportunity to discuss grant ideas and collaborative research opportunities. I found the meeting useful for knowing the scope and direction of the project going forward.”

Sharon (Qualitative researcher, Scotland)

“It was fantastic to meet in-person with everyone from the MuM-PreDiCT project. The enthusiasm and sense of ‘being a team’ was very apparent – it’s a privilege to be part of such an inspiring and collaborative research team!”

Holly (Psychiatry epidemiologist, England)

“It was wonderful and highly enjoyable meeting the other researchers. To have this many people working together to try and improve maternal health is impressive and inspiring. The meeting has only increased my enthusiasm for this project!”

Steph (Research fellow, England)

“It was great to finally meet everyone in-person after way too long behind our screens! I feel honoured to be part of such a wonderful and supportive team and I’m really looking forward to continuing our important work over the next few years. Watch this space.”

The big brains data scientists and statisticians, from the left: Utkarsh, Jonathan, Adeniyi, Mohamed, Chris and Charles.
The St Andrew’s (Scotland) ace team, from left: Adeniyi, Colin, Amaya and Utkarsh.

Steph and Sharon

We had a series of presentations from team members, group discussions to plan our next steps and a cosy dinner social in the evening. This was followed by an Early Career Researcher’s workshop the next day.

From left: Adeniyi, Rachel, Kate, Holly, Kelly-Ann and Amaya.
From left: Anu, Mohamed, Charles, Dilanthi, Buddhika, Neil, Steven, Jonathan, Krish and Utkarsh.
Some were too excited to tuck in…From left: Ing, Mitesh, Ngawai and Sally.

Reflection of an Early Career Researcher: First Grant Proposal as Principal Investigator

By Dr Stephanie Hanley, Research Fellow, University of Birmingham

I started with the MuM-PreDiCT team in November 2021, where I am working on an interview study aimed at understanding experiences of pregnancy with two or more long-term health conditions, whilst also gaining insights from partners and healthcare professionals on their views of care, and where improvements can be made.

At the start of the year, I was given the opportunity to lead on my first grant proposal, and although it was daunting (and stressful!) at the time, I’m so glad that I accepted the opportunity (and, of course, that we were successful in obtaining the funding).

The funding was awarded to help us create a Community of Practice to share knowledge, experience, and tips on making it easier for people to take part in health research and also to get involved in developing research. In particular, we will focus on including and supporting people with two or more long term health conditions, and from a wide variety of backgrounds, to be more involved with health research. The Community of Practice will include people with two or more long term health conditions, Public and Patient Involvement (PPI) leads and health researchers who are at the start of their careers.

Throughout the process of developing the grant, I have learnt a lot about myself, both as an individual and as a researcher. I have shared a few reflections below…

Learning new skills

One of my biggest learnings over the last 6 months has been around leadership. Previously, I have been guilty of doing everything because I’ve felt like everyone else was too busy to help or that I couldn’t ask them, for whatever reason. Ultimately, I was put in a situation where I had to delegate certain tasks to other members of the team, otherwise we wouldn’t have finished writing the grant prior to the submission deadline.

Who knew that it was so hard to keep meetings to time? Not me, until I started on this project (and in my role on MuM-PreDiCT)! It definitely takes certain skills to keep to an agenda and keep conversations moving along, and I’m constantly refining this new skill.

It’s ok to ask for help!

That’s what I need to keep reminding myself. I need to remember that nobody expects me to know everything and that we’re all one team working towards the project goals (whilst supporting each other along the way).

This was my first experience of writing a grant proposal, and I’ve learnt a lot about the crucial elements of a successful grant proposal whilst leaning on others who are more experienced in grant writing for advice and support when I needed it most.

Imposter syndrome

Not sure if it’s just who I am as a person or because I’m at an early stage in my career (and feel like I don’t know enough) but on many occasions I’ve felt the ‘imposter syndrome’ creep in where, as per the definition, internally I believe that I’m not as competent as others perceive me to be. I’m not sure when or if these feelings will go, but what I do know is that I have a very supportive team around me, and I’ve worked had to get to this position so I should try and enjoy my first experience as a Principal Investigator.

Thank you!

I just want to say a massive thank you to everyone who has contributed to the work so far- I couldn’t have done it without you. Rachel Plachcinski and Ngawai Moss from the MuM-PreDiCT project, Julie Clayton (LINC; University of Bristol), Jenny Robertson (AIM-CISC; University of Edinburgh) and Ralph Kwame Akyea (AIM; University of Southampton) have all been instrumental in the grant development stages, so thank you. I’m really looking forward to delivering the work, guided by the PPI experts, whilst continuing to develop my leadership and project delivery skills and hopefully lessening the symptoms of imposter syndrome along the way! Our plans for the first part of the project are to deliver a workshop where members of the Community of Practice will share their experiences of engaging with and being part of PPI groups. We will keep you up to speed with how the project is progressing.

Dr Steph Hanley is the Principal Investigator for the Public and Patient Involvement Community of Practice (CoP). Grant details: Invitation Only: Strategic Priority Fund Multimorbidity CoP 2022, (MR/X004341/1). The work is funded by the Medical Research Council and National Institute for Health Research, in partnership with the Economic and Social Research Council.

Drugs in pregnancy: a Q&A with parents

By Rachel Plachcinski (based on Q&A held on the Bump2Baby group with Professor Peter Brocklehurst)

A big issue highlighted by the MuM-PreDiCT patient and public involvement group is the lack of information available to women and families about medication use during pregnancy. This is a difficulty for anyone who is pregnant, and even more challenging for women and birthing people who are taking medication for long term health conditions.

Fortunately, there is work in progress to improve this situation. MuM-PreDiCT has a team focussing on polypharmacy, the use of several medications at the same time, and Professor Peter Brocklehurst, one of the MuM-PreDiCT co-investigators, has led on the production of the new report Healthy Mum, Healthy Baby, Healthy Future: The Case for UK Leadership in the Development of Safe Medicines for Use in Pregnancy.

We wanted to give more parents the opportunity to ask questions about this important issue, so we worked with the Bump2Baby parents voices group on Facebook to set up a Q&A with Prof Brocklehurst.  

Prof Brocklehurst explained that, as a consequence of the thalidomide scandal, virtually no drug treatments had been developed that were approved for use in pregnancy since the 1960s.

He is particularly keen to see the development of new therapies for pregnancy conditions such as preterm labour and pre-eclampsia, commenting: “Imagine if as much effort went into preventing preterm birth as went into HIV/AIDS in the early years.”

Bump2Baby members also flagged up the need for more treatment options for women and birthing people experiencing severe sickness (hyperemesis gravidarum), gestational diabetes and severe itching (intrahepatic cholestasis of pregnancy).

The recommendations in the report include setting up a central source of advice on drug use during pregnancy that can be used by both health professionals and the public, and for researchers developing new drugs (for all health conditions) to include pregnant women and birthing people in the testing process whenever they can. However, Bump2Baby members were unsure whether they would consent to take part in trials whilst pregnant, and it was suggested that this may depend on whether you had previous experience of health problems, both before and during pregnancy.

Prof Brocklehurst stressed how important it was that the voice of pregnant women and birthing people was at the heart of this initiative, as this would help to rebuild trust in medication and drug trials. “We need to find a way to make this work otherwise babies and mothers will continue to die or suffer because of a lack of effective and safe medicines, so we need to work together to find that way forward.”

That chat included lots of interesting insights into the different strands of work necessary to improve the situation, such as more discovery science, so we can better understand the physical processes that lead to pregnancy complications; the development of pregnancy toxicology models to test medicines before they are used on humans, and the networking and collaboration needed to get different groups, from patients to health professionals to pharma companies, working together effectively.

You can read the full Q&A transcript in the Bump2Baby group files on Facebook. Bump2Baby was set up by Rachel Plachcinski, patient and public involvement lead on MuM-PreDiCT, and Eleanor Mitchell, Associate Professor of Clinical Trials at the University of Nottingham, to give parents greater opportunities to learn about and contribute to the development of maternity research projects.

MuM-PreDiCT goes to Egypt!

By Ngawai Moss

MuM-PreDiCT research has always had patient and public involvement at its core to ensure the research is meaningful for women with two or more long term health conditions. I initially got involved during the early stages of development, now two years later we are 10 months into the funded programme!

We have a wonderful group of women who have helped shape and steer the research as it evolves. Their contributions are integrated in all sorts of ways, from changing the research design to include the perspective of Dads (who often play a massive role in supporting and caring for women), to changing the wording and design of public facing materials (like posters or our recent core research outcomes survey). Women from our patient and public involvement group have also helped raise the profile of the research and the types of issues they face in their pregnancy journeys speaking at events and writing blogs.

I was invited to Egypt to speak about ‘Patient, Public and Community Involvement in Women’s Health Research’ by Dr Mohamed Fawzy who was organising the Upper Egypt Assisted Reproduction Conference. He was looking to showcase best practice in women’s health research, and it seemed a perfect opportunity to highlight our approach to involvement as part of the MuM-PreDiCT research.

I spoke about patient and public involvement in women’s health research and provided context by featuring real life examples of impact from MuM-PreDiCT. I explained that women with two or more long term health conditions are subject matter experts in living with their health conditions, they appreciate or rely on their support networks. Patient insight like this is valuable and should be an important element of research to improve its relevance and quality. Ultimately study findings should be meaningful for those who will benefit from research learning and the improvements in care they may generate.

I also highlighted that ‘involvement’ is different from ‘participation’ (where research is conducted on or about patients). Women from the MuM-PreDiCT patient and public involvement group contribute to the research process, as do Rachel Plachcinski and I who are both co-investigators. I outlined some principles to help researchers who wanted to start involving patients in their research journey. For example: building relationships, involving people as early as possible, communicating openly, showing reciprocity, and costing involvement work into research. Different research environments and methods may require different approaches but the principles are broadly similar.

Traveling to Egypt was an amazing experience, meeting new people, sharing meals and seeing some of Egypt’s historic sights. There was an impressive range of speakers at the conference from all over the world… but luckily they upgraded me to ‘Prof’ Ngawai Moss on all the promotional materials so I stated off on a high!!

Ngawai sharing her views and experiences at the conferences and later exploring the Egyptian Pyramids.

Women Representative’s Perspective and Experience

My name is Sally Darby and I’m a a member of the Patient and Public Involvement advisory group for MuM-PreDiCT.

I was recently invited to speak at the Drug Information Association (DIA) Europe conference, at a session entitled, ‘Assessing Exposures to Medicines During Pregnancy: An Evolving Landscape. Track: 04 Pharmacovigilance and Safety’. I was asked to explain my experiences of pregnancy and childbirth as a woman taking medication for chronic health conditions. I was to follow papers delivered by medical professionals and researchers examining the impacts of medicines upon pregnancy and how best to include pregnant women in medical trials and research.

The session chair asked me to tell my personal story about my experience of wanting to become, and then becoming pregnant whilst taking medications, including what I was thinking when I found out I was pregnant, who I discussed issues with, how I came to my decision about pregnancy and medication use, and any other issues I felt were important. This could also include any concerns I had for my child as they developed due to taking medication while being pregnant. I was asked to talk for 5-7 minutes and then answer questions as part of the panel discussion. I opted to appear at the conference by video link rather than travelling to Brussels. Several other speakers were appearing virtually and there were also conference delegates present in person.

I spoke of my experiences of deciding to become and then becoming pregnant after having been diagnosed with Multiple Sclerosis (MS). This pregnancy was before I started taking medication for MS. I then talked through the very different experience of my second pregnancy, when I was on Tysabri, a disease modifying therapy (DMT) for MS. I explained the collaborative process of planning my pregnancy involving my husband, my neurologist, physiotherapist and other medical professionals. I was monitored closely through my pregnancies and had obstetrician-led care throughout. I was advised to have caesarean sections for my births.

During my second pregnancy I stopped taking my medication on medical advice, returning to the treatment two days after the birth. My second pregnancy was difficult in large part due to the need for me to manage my MS symptoms without medication. Since the birth of my second child I have changed DMT and now take Gilenya. I have been advised by my MS team that it is dangerous to mother and baby to become pregnant whilst taking Gilenya. I spoke at the conference of how this is a significant factor in my decision not to have any more children.

Following my short talk, the panel were asked a few questions. I was asked specifically about the challenges women taking medications face in pregnancy and how medical professionals can support them better. I spoke here about the anxieties and concerns I felt during my pregnancies, which were largely about having and caring for a newborn baby. I pointed to examples of care I know happens in some areas of the country today where hospitals and medical teams work closely together with maternity care to support pregnant women with pre-existing health conditions and ensure they feel prepared for the experience of childbirth and early motherhood.

Although I found the experience of talking to a group of experts in their fields a little intimidating and certainly nerve wracking, the delegates and panel made me feel very welcome and listened to. I hope that my contribution demonstrated the personal implications of their valuable research. I received a kind email from the session chair following the conference in which she stated her appreciation for my honest and personal account.  

Sally is the founder of the Mums Like Us network for disabled mothers.

Sally with her daughters.

Polypharmacy in pregnancy

What is polypharmacy?

Polypharmacy refers to people taking two or more different prescription medications at the same time. It has been increasing over the last 30 years, partly due to more health conditions being diagnosed, and also to more drugs being available.

Side effects are a possible problem for anyone taking prescription medicine, and it is a bigger issue for people who are taking two or more medicines. They may also have problems caused by the interaction between different medications.  We are studying the impact of polypharmacy on people with a variety of health conditions, to help us develop ways to combat the problems of taking so much medication.  

Why focus on polypharmacy in pregnancy?

Doctors, midwives and researchers don’t have a good understanding of how much polypharmacy affects pregnant women and birthing people and their babies.  This is mainly because new medication is rarely tested on pregnant women due to concerns about the possible impact on the unborn baby. We do know that the changes that occur in the body during pregnancy mean that medications may not have the same effect as they do in someone who is not pregnant. Conversely, due to the evidence gap, it can also be harmful for pregnant women with long term health conditions to stop their regular medications.

MuM-PreDiCT is working to address this gap in knowledge, with a particular focus on pregnant women with two or more long term health conditions.

What have we discovered so far?

We have reviewed earlier research studies looking at polypharmacy in pregnancy. We found that overall, one in five pregnancies were reported to be affected by polypharmacy.

We then analysed GP electronic health records of over 800,000 pregnancies that occurred in the UK between 2000 and 2019. We found that the number of medications prescribed during pregnancy has increased over the last 20 years. About a quarter of all pregnant women were prescribed two or more medications.  And of the women who had two or more long term conditions, more than half were prescribed two or more medications during pregnancy.

The most commonly prescribed medications in pregnancy are:

  • antibiotics
  • antidepressants
  • painkillers
  • iron
  • laxatives
  • inhalers
  • anti-inflammatory creams/gels/ointments

When we looked at the patterns of polypharmacy, we found two main groups:

  • Inhalers are commonly prescribed with antidepressants, antihistamines, anti-inflammatory creams/gels/ointments, emollients and steroids.
  • Antidepressants are commonly prescribed with medications for heartburn and acid reflux, and thyroid disorders.

What’s next?

We will look more closely at how polypharmacy affects the health of pregnant women and their babies, both during and after pregnancy. We will conduct further studies to look at whether certain combinations of medications increase or decrease the risk of pregnancy complications such as pre-eclampsia, gestational diabetes, and premature delivery or health conditions in the baby, such as birth defects.

Knowing the potential benefits and harms of consuming medications during pregnancy will help pregnant women and their health care professionals to make informed decisions about whether to continue or start medications in pregnancy.

Take home points

Multiple medications are commonly prescribed in pregnancy, and more so among those women with multiple health conditions. Women contemplating pregnancy, and the health professionals caring for them, have to weigh up the possible benefits and harms to both the mother and her baby of continuing with or stopping pre-pregnancy medications, and of starting new medication during pregnancy. Further research is needed to understand the potential effects of medications that are commonly prescribed together.

Compiled by Anuradhaa Subramanian, Ngawai Moss, Katherine Phillips, Rachel Plachcinski, Siang Ing Lee.