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Tackling endometriosis together with patients

 Around the world 176 million women suffer the pelvic pain of endometriosis – that’s around one in every 10 women between the age of puberty and menopause. We don’t know exactly what causes endometriosis, which means that research is a priority to help patients today and into the future.

Through an Engaged Research Bursary from APC Microbiome Ireland, Dr Siobhain O’ Mahony’s team worked with community partners to improve everyone’s understanding of the condition. In 2023, 45 people took part in a Conversation Café on Endometriosis at the River Lee Hotel. Patients, their parents, health care practitioners and researchers met to discuss a range of topics, including the impact of endometriosis on fertility options and on personal and professional relationships.

The event led to the formation of a PPI panel, who are eager to be involved in informing APC research and funding applications in the future.

“This project provided me with a true understanding of Engaged Research and how central patients and stakeholders are to our research. Patients want to be heard  and receive faster and better treatments and have more events like this where they can discuss, share and learn together.”

Dr Siobhain O’ Mahony, APC Microbiome Ireland

Real insights into IBD

“In 2021 I embarked on a novel research project at APC together with Naomi Hanrahan. She had gathered IBD patients experiences with various elements of diet since their diagnosis and wanted to  disseminate these findings through a PPI collaborative approach. As an IBD warrior myself for 20+ years, and through my work on the Board of Directors with Crohn’s & Colitis Ireland (CCI), this felt like a natural pathway for me.

We formed a PPI panel of IBD patients - which we called ‘IBD Insights’ – to disseminate the information and also to help write the first APC PPI paper (under review) along with each group sessions creating more ideas for future PPI research, and for fundamental science also.

This novel PPI research approach has given a voice to those that matter the most - the people suffering from IBD and through their lived experience, cultivate ideas and thoughts that may help those affected by IBD, and future research into this invisible and debilitating disease.”

Victoria Spillane, APC Microbiome Ireland and Crohn’s & Colitis Ireland

The patient’s voice- crucial to research

“Understanding the role of diet in IBD is complex, a complexity we felt could not be fully addressed without integrating the lived experience. Our PPI project aimed to clarify dietary components consumed and gather perspectives of individuals with IBD to understand their food choices and to identify key aspects for future research. The patient-collaborator panel we assembled was essential in guiding our investigations and grounding them in real-world issues often overlooked - such as in understanding the many factors affecting what someone living with an IBD can and will eat. Incorporating the patient's voice accelerates the discovery of patient-important aspects, reshaping how we approach problems and find solutions. The insights from the PPI panel were invaluable and have transformed my approach to research, in realising the impact it has on people's lives.”

Naomi Hanrahan, Final year PhD student in the College of Medicine and Health

Read more about APC and IBD: IBD Insights 

Engaged research and Long COVID

APC’s research programme on Long COVID led by Prof Liam O' Mahony implemented Engaged Research by design and hugely benefitted from the lived experience and knowledge of Long COVID patients incorporated through a variety of methods including a patient survey and focus groups. APC’s research on Long COVID implemented Engaged Research by Design and hugely benefitted from the lived experience and knowledge of Ms Tanja Buwalda, Long COVID sufferer and representative of ‘Long Covid Advocacy Ireland'.

“Long Covid patients are fighting to get identified, treated, and supported by the Irish health system. In light of this, the partnership between the Long Covid Ireland support group and APC on Long Covid research, and the resulting webinar and survey, has allowed patients to participate directly in the research and should set the standard for future exploration - allowing patients to participate in vital investigations that will have an impact on their health.

The novel patient/researcher webinar provided the first national education event on Long Covid and was wholeheartedly welcomed and supported by patients. We hope to see more collaborations in the future to help us make substantial advances in how we diagnose and treat Long Covid.”

Tanya Buwalda / Long COVID Support Ireland

Further Info

For further information on APC’s Engaged Research programme please contact:

• Caoimhe Byrne | cbyrne@ucc.ie