Discussing The Challenges of Lichen Sclerosus Research with Sophie Rees

The surprising roadblocks of Lichen Sclerosus research – and how they were overcome!

In this episode, you will be able to:

• Delve into the challenges faced in Lichen Sclerosus research and the consequences for affected individuals.
• Realize the value of spreading awareness about vulval and vaginal conditions to empower women.
• Grasp the essential role education and accurate diagnosis play in successfully treating Lichen Sclerosus.
• Investigate the impact of diverse and inclusive language in Lichen Sclerosus research on patient well-being.
• Recognize the importance of increasing healthcare access and improving treatments for Lichen Sclerosus patients.

Sophie Rees is a medical sociologist specializing in qualitative and mixed methods research to explore patient experience. She works at the University of Bristol Trials Centre, conducting qualitative research within randomized controlled trials. Sophie is the Chief Investigator of the ESRC-funded project Living with Vulval LS: A Mixed Methods Study, using a sociological approach to understand the experience of living with LS. She is passionate about tackling vulval stigma and understanding and improving patient experience.

By delving into the realm of Lichen Sclerosus (LS), her work aims to improve understanding, diagnosis, and care for those living with this condition. Bringing a unique perspective through her social science approach, Sophie is committed to raising awareness about the challenges faced by LS patients and finding ways to help healthcare professionals better support those affected.

Watch Sophie Rees and I discuss the challenges in Lichen Sclerosus Research Here:

00:00:00 – Introduction

00:01:09 – Hopes and Outcomes of Research

00:05:07 – Raising Awareness

00:08:45 – Research Process

00:13:39 – Creating Change

00:15:23 – Top Research Priorities for LS,

00:18:09 – Lack of Interest in LS,

00:20:00 – Laser Treatment for LS,

00:25:18 – Steroids as the Gold Standard,

00:28:58 – Importance of Research and Patient Education,

00:30:12 – Timeline of LS Research,

00:34:01 – Challenges in LS Research,

00:39:15 – LS Research and Reproductive Age,

00:43:13 – Inclusive LS Research,

00:45:27 – Research on LS,

00:49:10 – Ethics and Informed Consent,

00:51:11 – Lack of Diversity in Medical Research,

00:54:34 – Hurdles in Research,

00:58:24 – Importance of Patient Participation,

01:00:55 – Asking for Research Opportunities,

01:01:30 – Challenges of Research,

01:02:08 – LS on the Map,

01:02:31 – Connecting with Sophie,

01:03:19 – Conclusion,

• Speak to your medical professional before making any changes to your care.
• Check out Sophie Rees' research project Living with Vulval LS: A Mixed Method Study for a deeper understanding of the experience of living with LS.
• Look out for Sophie's educational tool, an animated video based on real interviews, which will be a useful tool for health professionals to learn about the impact of LS and improve care and treatment.
• Spread awareness about vulval vaginal conditions and the lack of education and understanding around them.
• Support campaigns to raise awareness and break the stigma surrounding vulval vaginal conditions, including LS.
• Encourage famous individuals to come forward and speak about their experience with LS to help raise awareness and start a conversation.
• Be patient with the research process, as quality research takes time and resources to produce.
• Be open to participating in research studies to help contribute to the understanding and improvement of LS care and treatment.
• Advocate for better education and understanding of the vulva and its conditions in medical schools and healthcare systems.

Connect with Sophie Rees on Instagram @vulva_researcher

Core outcome domains for lichen sclerosus: a CORALS initiative consensus statement

• Instagram: https://www.instagram.com/lichensclerosussupportnetwork/
• YouTube: https://www.youtube.com/channel/@lichensclerosussupportnetwork