Acceptability of Self-Sampling for Cervical Screening in the LGBTQIA+ Population – The Alternative Cervical Screening (ACES) LGBTQIA+2 Study

Inside the Mind of a Changemaker: Q&A with Dr. Jennifer Davies-Oliverira

+ What does success look like for you in the context of this project? How do you think the impact of your project will evolve over time?
Success for this project is discovering and disseminating a representative voice from the LGBTQ+ pertaining to barriers to current cervical screening and the acceptability of alternative cervical screening methods including vaginal and urine sampling.  This voice is crucial in achieving an equitable cervical screening programme, informing future changes that have the potential to increase the number of people from LGBTQ+ being screened and ultimately saving lives. 

Self-sampling methods, especially urine, has a very high acceptability in the LGBTQ+ community as it negates the need for healthcare contact (which can be unpredictable and negative especially for transgender and non-binary individuals) and the speculum examination (which can be uncomfortable, painful or cause dysphoria).  This could be a game-changer for inequity within the community – offering an acceptable method for cervical screening which has real world potential to increase screening rates.

The English cervical screening programme is currently exploring introducing self-sampling methods including vaginal and urine sampling especially for current non-attenders.  This work will add to the expanding evidence base supporting the inclusion of vaginal and urine sampling as an alternative cervical screening sampling method.  There is a high likelihood that both sampling methods will be included within the cervical screening offer in the near future. 

+ What results were you able to produce with the funding you received? What are some measurable impacts of diversity and inclusion within your community?
The project aimed to explore the current barriers to cervical screening and the prospective acceptability of self-sampling methods including urine as an alternative to current cervical screening within the LGBTQ+ community.  21 participants were interviewed individually or as part of a focus group who identified as cisgender and 16 interviews have been conducted with transgender masculine and non-binary (TMNB) individuals.  The data has been analyzed and currently the manuscript for TMNB individuals has been circulated amongst authors in its first draft.  The manuscript pertaining to cisgender individuals will be completed within the next 6 months.  Therefore, there will be two publications as a result of this work.

We have made contact with members of the LGBTQ+ through this project and this has been invaluable to the design, execution and success of the project.  There has been much interest especially from the transgender masculine community for this work as most are keen to find a more accessible and acceptable sampling method for cervical screening.  The relationship developed with stakeholders and communities will enable further work in the future including our new research project which enables current non-attenders to self-sample at home for cervical screening – the ACES at-home study. 

+ What challenges did you face during the project, and how did you overcome these? Based on this insight or if another location were to replicate this project, what would you do differently
The transphobic political and social environment within the UK meant that when we advertised for participants over social media, specifically to target the transgender masculine and non-binary communities, we were targeted by transphobic groups and featured in the UK media. 

However, the number of those who signed up for our study trebled in one day following this which was a really important boost to recruitment.  This highlighted how important this research is to the community and it is important to do.  Whilst the negative media was challenging it also cemented my determination to do the project. 

Criticism faced was even reported by the press:

https://www.dailymail.co.uk/news/article-11441983/Critics-hit-university-smear-test-advert-fails-use-word-woman.html

https://www.telegraph.co.uk/news/2022/11/17/university-accused-replacing-women-smear-test-study-invited/

+ How did your project contribute to the goals of equity, diversity, and inclusion, and how has your perspective evolved as a result of this work?
This project has equity, diversity and inclusion at its core.  It is a project that acknowledges the inequity for a minoritized community within healthcare intervention uptake – the cervical screening programme – and aims to understand this inequity and explore the acceptability of a possible solution to the problem – self-sampling methods for cervical screening.

In addition, it is part of a suite of studies - all intimately linked – which are developing a sampling method and testing which has real world potential to be used as a cervical screening method.  Therefore, it has direct translatability into clinical practice. 

I’ve also come to understand that it is often the small, basic things that make all the difference. What I have learnt is the language and colors we use can make the difference between including and excluding people from the LGBTQ+ community in healthcare.  We can do better through the small everyday interactions, and this could make the difference from someone being screened or not screened and ultimately picking up precancerous cervical disease and not.

+ How do you plan to sustain the impact of your project after the funding has ended?
Publication of this work is very important.  We are going to offer members of the LGBTQ+ community who are overdue screening the opportunity to self-sample.  These studies combined will inform future inclusive changes to the cervical screening programme. 

+ What advice would you give to others who are seeking to create impactful projects with EDI funding?
Ask communities – especially the ones whose voices tend not to be heard – ask them what is important to them and what would help them to have a better experience of healthcare. 

+ What advice would you offer to other fund recipients who are starting similar projects?
Make the research community relevant and consider bringing community partners onboard early.  Be open to changes in the research as community research will develop as the relationship between research and communities develop. 

View Dr. Jennifer Davies-Oliverira's presentation from IGCS 2024 in Dublin