Survey: Help prioritise a list of outcomes

Are you…

(i) planning a pregnancy / have been pregnant in the last 5 years, AND you have 2 or more long-term physical / mental health conditions (e.g. diabetes, asthma, depression, anxiety, other examples); or

(ii) a family member / partner / carer of a pregnant woman with 2 or more long-term health conditions; or 

(iii) a health / social care professional looking after women with 2 or more long-term health conditions or their children; or

(iv) a researcher interested in 2 or more long-term health conditions in pregnancy.


Take part in a survey!

Please help us choose a list of mother and baby outcomes that are so important, that they should be reported in all studies for pregnant women with multiple long-term conditions.

Link to survey & more info: https://bham.onlinesurveys.ac.uk/delphi-survey-core-outcome-set-mumpredict

Queries: contact Ing at s.i.lee@bham.ac.uk.

The survey takes 20 minutes, the first round will close mid June 2022.


How was the survey designed?

The survey asks you to rate on a scale of 1-9, how important are each outcome. This will help us agree on a minimum list that researchers should report in all studies.

The outcomes listed came from previous studies and focus groups with women, partners and clinicians.

Study protocol: https://bmjopen.bmj.com/content/11/10/e044919.long

Flowchart of the development of a Core Outcome Set.

Reflections of an early career researcher on patient & public involvement & engagement

MuM-PreDiCT’s Patient and Public Involvement & Engagement (PI&E) Advisory Group has been with us from the very beginning of our journey. To date, we have had seven meetings with the PI&E Advisory Group, and they have been invaluable in advising on all aspects of MuM-PreDiCT, starting with the £3m collaborative grant proposal, to the study design of our work packages, our recruitment strategy and the interpretation of our study findings.

 

One aspect of PI&E which isn’t talked about so much is how PI&E members influence our development and practice as individual researchers, as well as the conduct of a study. So here is my experience of working with the MuM-PreDiCT advisory group.

Active involvement in meetings
By attending PI&E meetings led by our PI&E lead, Rachel Plachcinski, I have learned some good practice for hosting meetings. Firstly, Rachel always has some fun ice breaking questions, such as ‘What is your favourite Easter egg chocolate’. I later incorporated this into my focus group with pregnant women with two or more long-term health conditions. This meant they did not have to share their medical history with the group if they did not feel comfortable doing so.

During the PI&E meetings, which are held online via Zoom, I found I struggled to juggle between following the conversation, formulating my thoughts on my response, and following the comments in the chat box. Reflecting on this, when conducting focus groups, I had designated colleagues who would follow up on the chat comments. We also had a designated person who would check in with participants and offer support after they discussed distressing experience.

I learned from PI&E members’ experience that it is important to acknowledge their input, especially when they have so graciously shared very personal stories. I also learned that the research meetings can be intimidating, especially for new members. Rachel, our PI&E lead, ensures that I prepare the relevant documents and share them with the PI&E members in advance. For workshops, I have prepared separate versions in Plain English to explain any medical jargon. I aim to follow the example set by my senior research colleagues, who always seek the thoughts and experiences of PI&E members in these meetings.

Learning new skills and approach
I have also learned new skills from MuM-PreDiCT PI&E members. I happily admit I am quite a dinosaur when it comes to information technology. It was PI&E co-investigator Ngawai Moss who introduced me to Canva for graphic design. I secretly try to learn a trick or two on how to make an engaging Twitter post by referring to @ngawai_n ’s Tweets. I also tried my hands on Miro board after PI&E member Sara introduced me to it. Working with patient charities to recruit for my focus groups, I learned the power and reach of Instagram. Our PI&E members have also provided helpful guidance on the sites that new mothers would frequent, such as Facebook groups for home schooling activities and meal plans for families.

Sensitive and clear wording
MuM-PreDiCT’s PI&E Advisory Group always comes to the rescue when I need advice on wording for research documents, such as study posters, participant information sheets, surveys, manuscripts (and this blog post!). They coined the phrase ‘2 or more long-term health conditions’. They would happily cover my documents in red tracked changes to make it read better. Their feedback made me much more aware of the impact words can have.

Pilot test
The MuM-PreDiCT PI&E Advisory Group was also a safe place for me to test out my approach to conducting my focus group, exploring outcomes that should be included in the Core Outcome Set for pregnant women with 2 or more long-term conditions. The exercise meant that I recognised the shortcoming of my approach. I was able to reframe and simplify my question to stimulate a productive discussion on outcomes, rather than possible solutions to bad experiences. This meant that I could get the most out of the focus groups to meet the research objective. The PI&E members have also pilot tested my Delphi survey for the Core Outcome Set development and I am very excited to share the live survey here

Thank you!
So I want to say a big thank you to our lovely MuM-PreDiCT PI&E. Advisory Group. I have personally learned a lot from the group and I hope we can do you proud with our research work.

Prepared by Ing Lee, Rachel Plachcinski, Ngawai Moss, and Megha Singh.

Ing happiest when eating cakes.

Meet The Team: Anuradhaa Subramanian

MuM-PreDiCT will be running a ‘Meet The Team’ series to introduce our team members.

This month, we introduce you to Anuradhaa Subramanian.


I’m a final year PhD student, studying the burden of Polycystic Ovary Syndrome (PCOS) and I work as a research fellow at the University of Birmingham.

I’m interested in the use of real-world data such as primary care and hospital records to answer epidemiological and pharmacoepidemiological questions pertinent to patterns of illnesses and the impact of different medications at the population level. I’m particularly interested in the epidemiology of PCOS, as this common condition affecting women is misunderstood, overlooked by researchers and funders, and overall dismissed as a women’s health issue.

I grew up in Chennai, India, a beautiful city home to beaches, delicious food and rich history. I first decided to pursue engineering as an undergraduate in India and went on to take up an internship at Harvard-MIT Health Sciences and Technology, USA. But after six months of intense work, I decided to move on and pursue something that involved fewer pipettes and animals, and more data and colourful graphs.

This is when I moved to the UK to study for a master’s degree in Health Research Methods and soon after, I felt I had found my calling. I then got a job in academia within a fantastic multidisciplinary team at the University of Birmingham. I had the opportunity to be involved in a series of epidemiological studies and published research papers on several conditions like PCOS, idiopathic intracranial hypertension (a rare brain illness), Henoch-Schoenlein purpura (a rash which can lead to kidney problems), type 2 diabetes, and obstructive sleep apnoea.

It was an incredible learning curve to hone my skills in data analysis and management, and also to gain valuable understanding of the biological underpinnings of these conditions. Our team expanded both in terms of the specialist knowledge and cultural, ethnic and geographic diversity brought in by several colleagues, and so my experience at the university got richer and more profound. 

I’m now working as part of the MuM-PreDiCT team, looking at the effects of having two or more long term health conditions and the issues associated with medication use during pregnancy. 

In the wake of the pandemic, I have also recently been involved in epidemiological work related to COVID-19 and Long COVID. When my colleagues and I published about the higher risk of contracting COVID-19 for women with PCOS, it helped increase awareness about the burden of living with PCOS. In the future, I want to use my acquired skills in the best way possible to further pharmacoepidemiological and PCOS research and bring empowerment and support to women with PCOS.

As much as I enjoy research, I equally enjoy my down time. I like to explore cooking and baking recipes, practice yoga, dance and play tennis and badminton.


Catch Anu in action this Saturday 5th March 2022 (1pm) at PCOS & The Pill: An International Women’s Day 2022 special online event!

PCOS & The Pill: An International Women’s Day 2022 special event! – DAISy-PCOS (daisypcos.com)

Focus group: What should researchers measure?

Are you…

Planning a pregnancy / pregnant in the last 5 years?
– Living with 2 or more long-term physical or mental health conditions 
(eg hypertension, diabetes, asthma, eczema, depression, anxiety, etc)?  

We would like to invite you to join an online Focus Group. We want to hear your views on what researchers should measure in studies of pregnant women & birthing people with multiple health conditions.

This is part of a bigger study to develop a Core Outcome Set.

What is a Core Outcome Set?

Researchers measure outcomes to understand what impact a health condition or an intervention has on a person.

Core Outcome Set is a list of outcomes that should be reported in all research studies for a specific health condition. It is agreed by people with the health condition, their health care professionals and researchers. If all studies for a health condition report the same types of outcomes, the results can be compared and combined.

Watch this short video on Core Outcome Set: http://www.comet-initiative.org/Patients

Why is it important?

We would like to find out what outcomes are important to you, that should be reported in all future studies of pregnant women and birthing people with multiple health conditions. Having the Core Outcome Set ready will make it easier and encourage researchers to do studies in this area. 

What is involved?

You will be invited to take part in an online Focus Group hosted on Zoom lasting for 1.5 to 2 hours. You will be reimbursed with a £25 voucher. Each focus group will have 6-8 participants and 2-3 facilitators. You can bring along your partner / carer / a family member so they can join the discussion too (and they will also be reimbursed £25).

When will the Focus Group take place?

There are two dates:

Thursday, 10th February 20222000pm to 2200pmWomen or birthing people with multiple long-term conditions only

This is currently full, but we can add you to the waiting list.
Tuesday, 8th March 20222000pm to 2200pmWomen / birthing people with multiple long-term conditions  

with their partner / a family member / carer

This is currently full, but we can add you to the waiting list.

How do I get involved?

If you would like to take part, please email the research team at s.i.lee@bham.ac.uk  

We’ll be in touch with next steps soon after that!

We can provide a separate session to talk through how to use Zoom if you have never used it before.

More information

COMET study registration: https://cometinitiative.org/Studies/Details/1724

Protocol published in BMJ Open: https://pubmed.ncbi.nlm.nih.gov/34716152/

Participant information sheet:  https://tinyurl.com/2p3v6536

Focus group: Health / social care professionals (Core Outcome Set)

Are you…

  • A health or social care professionals in maternity services (e.g. midwife, doctor, nurse, health visitor, etc)?
  • Do you look after pregnant women & birthing people with 2 or more long-term physical or mental health conditions (eg hypertension, diabetes, eczema, depression, anxiety, etc)?

We would like to invite you to join a Focus Group to discuss what research outcomes are important to you.

This is part of a bigger study to develop a Core Outcome Set.

What is a Core Outcome Set?

An outcome is how a treatment affects a health condition. If all studies for a health condition report the same outcomes, they can be compared so we get a better idea of whether a new treatment works. A Core Outcome Set is a list of outcomes that should ideally be reported in research studies. It is agreed by people with the health condition, their health care professionals and researchers. We will have focus groups for pregnant women and birthing people with multiple long-term health conditions next Spring – stay tune for updates!

Why is it important?

We would like to find out what research outcomes are important to you, that should be reported in future studies on pregnant women and birthing people with 2 or more long-term health or mental health conditions. Having the Core Outcome Set ready will make it easier and encourage researchers to do studies in this area. Watch a short video on Core Outcome Set: http://www.comet-initiative.org/Patients

What is involved?

One Focus Group hosted on Zoom lasting for 45 to 60 minutes.

How do I get involved?

If you would like to take part, please email the research team at s.i.lee@bham.ac.uk  

We’ll be in touch with next steps soon after that!

More information

COMET study registration: https://cometinitiative.org/Studies/Details/1724

Protocol published in BMJ Open: https://pubmed.ncbi.nlm.nih.gov/34716152/

Participant information sheet: https://tinyurl.com/372jhzkc

We are expanding our Patient & Public Advisory Group

Are you interested in finding out more about health research?

Do you have two or more long term health conditions, and recent experience of pregnancy and birth?

We’re expanding the MuM-PreDiCT patient and public involvement advisory group and are looking for people who can help us shape this exciting research project.

Six amazing women – Sara, Jennifer, Charis, Siddequah, Nicola and Mary – joined the group last year and their insights and priorities were an important part of our successful bid for funding for the research.

Now we want to expand the group to make sure we cover pregnant women and birthing people’s experiences of maternity care and having two or more long term health conditions in all four countries of the UK, and from a variety of backgrounds. We particularly want to hear from people who:

  • Live in Northern Ireland, Wales or Scotland
  • Were born in another country, such as Poland or Pakistan
  • Live in very rural areas, with a significant distance to travel to see medical specialists
  • Are of Black or Mixed ethnic group
  • Have experienced health issues such as cancer, deafness, heart disease, skin conditions, blood disorders such as sickle cell disease, being HIV positive or having an organ transplant

The group meets (virtually online) 3 or 4 times per year to find out how the research is progressing and discuss issues arising from this. All members are paid £25 per hour for attending. We also have a WhatsApp group where we keep in touch between meetings.

To find out more about the group, or to express an interest in joining, email r.plachcinski@bham.ac.uk.

To see the full list of health conditions we are studying see this blog post https://mumpredict.org/79-health-conditions-defining-2-or-more-long-term-health-conditions-in-pregnancy/

MuM-PreDiCT gets funded!

We are very pleased to announce that MuM-PreDiCT has been successful in the funding call from the Strategic Priority Fund (SPF): Tackling multimorbidity at scale: Understanding disease clusters, determinants & biological pathways (grant number MR/W014432/1).

The Strategic Priority Fund “Tackling multimorbidity at scale” programme is delivered by the Medical Research Council (MRC) and the National Institute for Health Research (NIHR) in partnership with the Economic and Social Research Council and in collaboration with the Engineering and Physical Sciences Research Council.

We would like to extend our heartfelt gratitude to our amazing patient and public involvement (PPI) advisory group and PPI co-investigators, and every research team member for all the hardwork.

We look forward to embarking on this exciting journey!


Links:

Multimorbidity / multiple long-term conditions (MLTC) – Research – Medical Research Council (ukri.org)

New study aims to improve healthcare for pregnant women with multiple health conditions (birmingham.ac.uk)

Funding to support key research into multimorbidity – School of Medicine News (st-andrews.ac.uk)

New study aims to improve healthcare for pregnant women with multiple health conditions – Keele University

News in Brief – new Life Sciences Chair, anti-racism campaign launched, medical director update – Leading Healthcare