Endometriosis and chronic pain

"This research aims to co-research alongside people with endometriosis into the digital management of chronic pain associated with endometriosis. "Endometriosis is one of the most common problems encountered in gynaecology" (Overton, Davis, McMillan, & Shaw, 2007). One in 10 people with uterus' have endometriosis, yet it typically takes 8 years on average to receive a diagnosis from the onset of symptoms. As stated in 'The Atlas of Endometriosis' (Overton, Davis, McMillan, & Shaw, 2007), major symptoms include dysmenorrhoea (painful periods), dyspareunia (painful intercourse) and pelvic pain. There can also be gastrointestinal (digestive system) and urinary (bladder) symptoms. Endometriosis can lead to decreased quality of life and an average annual cost per person of 9579 EUR (Simoens, Dunselman, & Dirksen et al., 2012). Despite its common prevalence and debilitating symptoms, endometriosis is a historically under-researched condition with little available in terms of treatment and symptom management. NICE guidelines for treating endometriosis are limited to pain medication, hormonal treatment and surgery, though none are curative (NICE, 2017).
The James Lind Alliance Priority Setting Partnership for Endometriosis set one of the top 10 research priorities of endometriosis in the UK and Ireland, to be;
"What are the most effective non-surgical ways of managing endometriosis related pain and/or symptoms (medical/non-medical)?" (Horne, Saunders, Abokhrais, & Hogg, 2017)
This project will address this question as it pertains to digital interventions using a participatory research design (Wright, et al., 2013). Currently there exists little digital support specific to endometriosis, a study by Ball et al. (2020) showed co-design may improve engagement in individuals with chronic pelvic pain. The use of online support groups is growing around endometriosis along with menstrual cycle tracking. There is also a self-tracking tool 'Phendo' as a part of an observational research study 'citizen endo', connecting people living with endometriosis with researchers; beyond this there is very little tailored specifically for endometriosis. There is a clear need for far more novel digital tools, including education, diagnosis and self-management.
This project will begin with a systematic review of current literature, especially in regards to chronic pain and symptom management. This will be used to get an understanding of the current state of the art and will help to facilitate conversations with future participants.
The next phase will be recruiting and engaging with people with endometriosis, specifically aiming to involve individuals under-represented in endometriosis research, like trans and non-binary folk as well as BAME individuals. This project will recruit people outside of clinical pathways and will be instead focusing on social media as well as online support groups and Endometriosis UK, the leading endometriosis charity in the UK.
The initial studies will use largely qualitative methods to engage with participants initially and will aim to design the further research plan alongside the co-researchers. Online ethnography will be used, capturing the current use of social media for support and surveys to further probe these initial findings. These studies will explore the lived experience of endometriosis, including aspects such as pain, suffering, issues around inclusion and care access. There will then be a series of co-design workshops aiming to engage participants in the creation of a digital tool. The final stage will be evaluation and iteration which will distribute a prototype tool to participants and then have feedback workshops to understand how to further change the design.
The research goals will be to understand the current ways people are managing their endometriosis, identify what digital tools they find useful, and to co-design a tool that can help with endometriosis diagnosis, management or education."

Impact on Health and Care
The CDT primarily addresses the most pressing needs of nations such as the UK - namely the growth of expenditure on long term health conditions. These conditions (e.g. diabetes, depression, arthritis) cost the NHS over £70Bn a year (~70% of its budget). As our populations continue to age these illnesses threaten the nation's health and its finances.

Digital technologies transforming our world - from transport to relationships, from entertainment to finance - and there is consensus that digital solutions will have a huge role to play in health and care. Through the CDT's emphasis on multidisciplinarity, teamwork, design and responsible innovation, it will produce future leaders positioned to seize that opportunity.

Impact on the Economy
The UK has Europe's 2nd largest medical technology industry and a hugely strong track record in health, technology and societal research. It is very well-placed to develop digital health and care solutions that meet the needs of society through the creation of new businesses.

Achieving economic impact is more than a matter of technology. The CDT has therefore been designed to ensure that its graduates are team players with deep understanding of health and social care systems, good design and the social context within which a new technology is introduced.

Many multinationals have been keen to engage the CDT (e.g. Microsoft, AstraZeneca, Lilly, Biogen, Arm, Huawei ) and part of the Director's role will be to position the UK as a destination for inwards investment in Digital Health. CDT partners collectively employ nearly 1,000,000 people worldwide and are easily in a position to create thousands of jobs in the UK.

The connection to CDT research will strongly benefit UK enterprises such as System C and Babylon, along with smaller companies such as Ayuda Heuristics and Evolyst.

Impact on the Public
When new technologies are proposed to collect and analyse highly personal health data, and are potentially involved in life or death decisions, it is vital that the public are given a voice. The team's experience is that listening to the public makes research better, however involving a full spectrum of the community in research also has benefits to those communities; it can be empowering, it can support the personal development of individuals within communities who may have little awareness of higher education and it can catalyse community groups to come together around key health and care issues.

Policy Makers
From the team's conversations with the senior leadership of the NHS, local leaders of health and social care transformation (see letters from NHS and Bristol City Council) and national reports, it is very apparent that digital solutions are seen as vital to the delivery of health and care. The research of the CDT can inform policy makers about the likely impact of new technology on future services.

Partner organisation Care & Repair will disseminate research findings around independent living and have a track record of translating academic research into changes in practice and policy.

Carers UK represent the role of informal carers, such as family members, in health and social care. They have a strong voice in policy development in the UK and are well-placed to disseminate the CDTs research to policy makers.

STEM Education
It has been shown that outreach for school age children around STEM topics can improve engagement in STEM topics at school. However female entry into STEM at University level remains dramatically lower than males; the reverse being true for health and life sciences. The CDT outreach leverages this fact to focus STEM outreach activities on digital health and care, which can encourage young women into computer science and impact on the next generation of women in higher education.

For academic impact see "Academic Beneficiaries" section.