Wearable technology: The next stage of endometriosis care?

“The real trouble is there’s such a diversity of symptoms, endometriosis is absolutely a nightmare disorder and can have a terrible effect.”

So says Dr Philippa Saunders, co-director at The University of Edinburgh’s EXPPECT Centre for Pelvic Pain and Endometriosis, a leading researcher into endometriosis treatment and pain. 

Dr Saunders leads a team researching how effective and personalised treatment can be delivered via wearable smart technologies, helping to deliver long-term management and understanding of endometriosis. 

Endometriosis is a chronic health disorder which causes tissue to form outside of the lining of the uterus, affecting around one in ten women and people assigned female at birth. 

Current tools for monitoring endometriosis vary from large paper log sheets which can be printed off and completed throughout the month, to apps like Endo Empowered and Flutter which share lifestyle and dietary tips for ‘managing’ pain. 

Dr Saunders’ analysis focuses on the potential power of watch or ‘clip-on’ technology in managing and monitoring endometriosis. 

Despite being as common as diabetes, endometriosis is often misdiagnosed and misunderstood, with many waiting nearly a decade to receive any formal diagnosis. According to Endometriosis UK, diagnostic waiting times are only getting worse. 

As Dr Saunders explained: “The first port of call is often the pill, which can be good for people with bad periods, but if you have endometriosis that just isn’t going to cut it.” 

The pain usually starts as a dull ache or jabbing sensation in an individual’s colon or lower back, eventually becoming agonising and constant as the condition progresses. 

Dr Saunders and her team believe that using ‘smart’ technologies could provide a better understanding of the healthcare challenges which surround endometriosis. They believe that tracking tech offers the chance to gather objective and detailed data to monitor and assess patients’ physical activity, lifestyle and sleep patterns which can all affect pain. 

But as Dr Saunders made clear during our interview, wearable technology doesn’t represent a ‘treatment’ for endometriosis; it instead provides a means of monitoring symptoms, providing data that can then be used to enhance a holistic approach to patient care.  

“I see wearable tech as the thing that’s part of the armour to help people manage their lives in a way that gives them the best possible outcome. 

“I also think people should have the option for medication, if that's good for them.

“If you’re a young individual or even a transgender individual, you may want to try hormone suppression to shut everything down, that may be what’s best for you. 

“Wearable technology could also help medical staff to work on a patient as a person that needs treatment that suits their stage of life,” she explained.

The pill problem 

For Dr Saunders, reports of growing scepticism towards the pill came as a surprise, particularly as she had felt ‘pretty positive’ about hormonal contraception when she was younger. 

“We find that a lot of young people are wary of putting a drug in their body, even if it may alleviate the symptoms. 

“We shouldn’t fool ourselves that in cases where people have the most serious conditions, where their bowels and uterus are knotted, that changing your diet or using an app is going to solve that chronic pain.

“For people who have milder symptoms and are keen to take ownership and take control of their mental health, there are these alternative ways that we find are very popular with patients.

“What we want people to do is to be more educated and empowered about their own health, especially when GPs may not be well-educated on this,” Dr Saunders said. 

She added that there isn’t a ‘one size fits all’ pill that is going to improve the symptoms of every patient, acknowledging that patients deserve better information about the options available to them. 

This is where she believes wearables could help. 

Personalised and pre-emptive care 

The Edinburgh research team see the use of wearable technology as an opportunity to improve the quality of assessment in clinical trials and in everyday use, by allowing participants and patients to create their own ‘personalised pain scales’, enabling participants to more accurately track symptoms without having to actively input data themselves. 

Avoiding the need for active data input also reduces the burden of tracking by individuals, a process complicated by the fact that patients often struggle to recall or describe pain, once it has passed. 

What’s more, Dr Saunders recognises how ‘triggering’ active symptom tracking can be, with more ‘passive’ data acquisition via wearables a positive alternative for those not wanting to ‘recall’ or ‘record’ intense periods of emotional and physical distress, especially when issues like infertility arise. 

For researchers and clinicians, introducing more wearable and smart technology could help provide a rich and diverse source of data to be used in understanding how endometriosis manifests and varies among individuals with unique symptom and health trajectories. 

This data could in turn be fed into algorithms which would be used to support medical professionals with diagnosing endometriosis, supporting patient self-management strategies and better targeting the condition overall. 

“What we want to see is a lot more tracking of patient’s so that NHS services can provide better care. 

“We’re trying to produce algorithms which would help come up with the big red flag for endometriosis. 

“Say if a patient comes in with fatigue, heavy periods, loads of UTIs, period pain, three out of four of those occurring regularly should produce a flash up which tells GPs - this patient could have endometriosis,” Dr Saunders explained. 

She is hopeful that future NHS patients could be given smart watches, or pointed towards smart phone apps, which monitor flare ups, helping patients and professionals to register when pain is worst and what could be done to ease this, such as advocating more physical movement, a change of diet, or methods for improving sleep. 

Whose data? 

Despite all of this, Dr Saunders acknowledged that the protection of patient data is by no means a given. 

Whilst EXPECCT’s research approaches wearable tech data as information which patients should own and have access to, ‘owning’ and protecting data is a murky area when it comes to developing healthcare technology. 

With the UK data watchdog scheduled to review period and fertility apps amid rising security fears, and recent outrage over the selling of NHS patient data to foreign companies, concerns around the safety of endometriosis data speaks to the controversy and insecurity of personal information in an increasingly globalised and digitised healthcare environment. 

“Ownership of data, particularly NHS data is a very important issue that I think we’ve all got our heads in the sand about,” Dr Saunders said.

Looking ahead Dr Saunders sees scope for wearables to work alongside more familiar medical processes like blood tests, with the both providing potentially useful data for treatment and analysis. 

She explained how more research and information was needed to understand the full impact that smart tech could have. 

“At the moment, I don’t think we should over promise what this technology could do for underrepresented groups.

“Wearable technology could help widen health access if it is seen as a less intrusive thing, but just thinking aloud, I don’t think we’re at that stage yet and I don’t think our models are sufficiently gradual to pick up everybody. 

“However I see these things as moving towards what we all want, which is personalised care,” she said.