Humans of health research

Alison Perry is a Parasol Foundation Women’s Health Research Fellow, at Imperial College London based at the George Institute for Global Health.

While studying history at the University of British Columbia, she became interested in the legalisation of midwifery in Canada and the politics of childbirth.

She moved to the UK to undertake her midwifery training at Chester College, University of Liverpool in 1999. Her research focuses on engaging communities and amplifying people’s voices in research.   

“I’ve always been research-active, alongside my clinical practice as an NHS midwife. I’m especially interested in the mechanisms of meaningful and creative engagement. What works for whom, in what way, why, and in what context?  

“Historically, women haven’t always been involved in the design of research about their own health issues. That seems wrong to me, not only ethically, but also because research findings aren’t reliable if they haven’t taken account of different populations, ethnicity, gender, and so on.  

“Two years ago, along with two community partners interested in women’s health issues, I set up a local women's health engagement group. Now known as The Bridge, we have ten core members and share both a passion for women’s health and a connection to the White City and the catchment areas of our maternity hospitals.

"We have a wide range of networks and reproductive experience and are dedicated to raising awareness around women’s health issues and cultivating relationships between researchers and the health system and the local community.  

“We meet regularly and enjoy hosting researchers to share about their area of work.

"We have been fortunate to be awarded two Societal Engagement Seed fund grants by Imperial to hold engagement events that bring different groups and individuals together to explore topics relating to women’s issues, rights, and health.  

“Earlier this year, for example, we hosted a film night around cultural awareness and diversity. We showed a series of film vignettes from the ‘It’s Okay to Ask’ project that raises awareness around perceptions and experiences of people from a wide range of backgrounds in maternity and childbirth.

"As hoped, clinicians, members of the community and researchers attended, and it provided an opportunity to consider maternity topics from different perspectives.

"Later this year, we're doing another event, which will showcase the work of a local Eritrean women's sewing group, including period products, whilst raising awareness around menstrual health and period poverty.

"The sewing group provides valuable skills development, community networks, and English language conversation skills for those in the class.  

“In June, I started doctoral work within a bigger project called, called Bia (Blood in Action), named after the Greek goddess of bodily power. I am very fortunate to be funded by The Parasol Foundation to do this research. It is led by Dr Edward Mullins, Clinical Senior Lecturer in Obstetrics at Imperial College London and Honorary Consultant in Obstetrics and Gynaecology at Imperial College Healthcare NHS Trust.

"Bia is about developing better use of routinely collected maternal blood samples, in order to inform population level health and disease in pregnancy.

"We are excited about the potential of the Bia project and my PhD is particularly concerned with the content and method of public conversations and engagement, which will inform and influence the themes of the project.

"We are currently co-creating a programme of engagement to inform and influence the project using creative methods of involvement, including storytelling.

“For me, part of the magic and challenge of engagement is having the insight to know how you're going to harness the learning that is gained with people, rather than it just being a nice thing to do.

"Engagement is a bridge between the community and the health system or the research system – a bridge which, like the musical term, brings us new perspective on the rest of the song, so to speak.” 

Stephanie is a graduate of Imperial College London’s Agents of Change programme. The programme aims to support, empower and connect women in Imperial’s local community (within the boroughs of Hammersmith & Fulham and Kensington & Chelsea) to drive positive social change.

For Stephanie, who is now a family support officer with Homestart, it has had a lasting impact. Whilst on the programme, she was assigned Alison Perry as a mentor. The two women shared a mutual interest in women’s health issues and giving women a voice. Their community links have gone from strength to strength.  

“When I first met Alison in 2019, I had just read a report about Black women being (then) five times more likely than white women to die in childbirth. That wasn’t something I’d heard about before. It horrified me and made me angry. It also made me want to know why.   

“Our conversation sparked a lasting relationship between us – we realised we both wanted to give women a voice about unspoken issues like this. More than that: we wanted to connect them with the professionals who might be able to make a difference.   

“With Fardowsa Sharif, we set up the Bridge to explore women’s health issues by connecting local clinicians and researchers with women in the community.

"We are a small but growing group with a core committee of ten women. Between us, we organise events with a guest speaker who is usually a clinician or researcher, then we think about whether and how we can link the speaker and their work with women in our community.  

“As a co-founder of the Bridge, I am motivated by a fervent commitment to amplifying the voices of women in my community and driving the social change that will promote gender equality.  

“As a Black woman, I am particularly committed to ensuring that the perspectives and experiences of Black women are fully represented and included in our efforts to create a more inclusive and just society.

"It is imperative that decisions pertaining to Black women are made with their active participation and input, rather than without their representation.

"This approach ensures that the unique perspectives and needs of Black women are fully considered and integrated into the decision-making process, resulting in more equitable outcomes. 

“I want to get women talking about ‘unspeakable’ issues like menstruation so that they become better aware of their own bodies and their health. I also want health professionals to hear their voices and views and understand the challenges they face.    

"For one of our projects to break the taboo of menstruation, we are linking up with a local Muslim women's sewing group to hold an open community event.

"They will be showcasing the amazing creations that they have been working on throughout the year and, during the event, will assist people making novelty period products to display. We'll have sexual health workers and gynaecologists attending too. It will be interesting to see where the conversations take us next."  

“I’ve learnt so much from meeting women in our community. For instance, I had a home birth with my son in the NHS 19 years ago, but many of the Black women I have engaged with were unaware that this was an option. It seems that they aren’t offered the option of a home birth, giving rise to a misconception that this is only available through private healthcare. 

"I've undertaken roles within Imperial College London and Imperial College Healthcare NHS Trust, serving on The Pregnancy and Prematurity Community committee as well as the Management Team.

"All of my involvements over the last few years have significantly enriched my academic exploration and deepened my interests in the intricate domain of Black women's health.

"This heightened awareness has sparked my aspiration to embark on a doctoral journey in the near future”

Fardowsa Sharif came to the UK from Somalia 14 years ago. She first became interested in research after completing her degree in Education and Social Sciences at St Mary’s University. She now works as a signposting and information officer for Haringey Advice Partnership and some project with Healthwatch Haringey. Along with Alison Perry and Stephanie Williams, she is a co-founder of The Bridge project in West London, where she will support patient and public involvement. 

“Research accounted for about 60 per cent of my degree modules, and I knew I wanted to build it into my career somehow.

"When I was working as a healthcare advocate in my last role at Queen Charlotte Hospital, part of Imperial College Healthcare NHS Trust, I became interested in women’s experience of healthcare – especially in the minority ethnic communities in and around White City, where I live. 

“I was asked to help recruit people for a research study called the Female Genital Mutilation (FGM) Sister Study. Researchers wanted to hear from men and women in communities impacted by FGM.

"FGM is when women are subjected to a procedure to remove part or all of their external genitalia or other injuries to their genital organs for non-medical reasons.

"The study aimed to understand people’s preference about the timing of deinfibulation (reversing surgery) to open up about the impact of FGM. I found it difficult to recruit women for the trial because they didn’t know anything about it and didn’t understand the benefits of taking part. 

“I believe that research has a vital role to play in improving people’s experiences of healthcare. But to be effective, we have to give them a voice. That means telling people why research matters: it is important because we use its results to set policy, to decide which services are a priority and how those services should be set up.

"To give people a voice, we have to explain what we are trying to understand and ask how best we can involve them. That way, we will give them the confidence and courage to speak up, even about sensitive issues. We are designing research studies from the bottom up, not the top down. 

“I decided I wanted to get more involved in making this happen and I was fortunate to be introduced to Alison Perry and, through her, Stephanie Williams. Between the three of us we co-founded the Bridge to connect health professionals with the communities of Somalian, Eritrean and Caribbean women in White City.

"The project is still in its early days but already we are starting to reach out into communities, to find out what issues people have with current services and how they would like to be informed and involved in future.

"We are encouraging women not to isolate themselves from society at home, but to become a part of the community. We will support them to get involved with research studies about health services that are important to them. 

“I want women to feel a sense of belonging – to say ‘it’s my body, my period, my pregnancy, my birth: I know what services are available to me. I know how to acess my pregnancy check-ups. I want to have a say in how my health services are run’. 

“For any research project to be successful, it’s not just about getting unseen communities to the table. We have to close the loop. If someone has invested their time in a research study, we owe it to them to let them know what is going to happen as a result of their involvement. 

"Maybe their views will feed into a new policy, or will impact on a clinic’s location or opening times. Whatever the outcome, we must let people know how they are influencing change. 

“I feel very passionate about this and really excited to be helping more Black women find their voice.

"I am working full-time alongside studying for my Masters degree in Education and International Development at St Mary’s University. My dissertation topic will focus on women’s education and health and the work we are doing through the Bridge.

"I hope that in future we will have an impact on communities further afield, but I’m happy to be starting with my own community in White City.”