Dr. Jan Dixon, physician and researcher at the Royal Victoria Infirmary, Newcastle, is the new Associate Principal Investigator of UNEW in the IDEA-FAST project.
1. You’re the new associate principal investigator of the NEWCASTLE. What does this entail? Can you walk us through your new role and associated responsibilities?
This role offers an opportunity to gain exposure and understanding of the work of a principal investigator for a specific clinical trial. This is part of a formal six-month programme developed by the National Institute of Healthcare Research (NIHR) which I am currently participating in.
Responsibilities include those that would traditionally be performed by the PI; oversight and leadership of day to day research delivery; from participant recruitment to study staff delegation, overseeing a ‘pipeline of consumables’ and liaising with patient representatives and stakeholders, as well as other study sites and working closely with the senior consortium partners.
It is a big ‘step up’ in responsibility but invaluable leadership and management experience that is highly translatable to clinical practice, research and beyond.
2. What is your scientific background? What experience are you bringing to the project?
I completed two years of postgraduate training in clinical medicine, including internal medicine, surgery, emergency medicine and radiology. As well as outpatient clinical assessments, I am responsible for emergency medical provision to study participants at our research facility.
3. What is your motivation as a physician and a researcher?
Clinical care is increasingly guideline and data driven, and when you have roles both as a physician and a researcher, you’re able to contribute to everyday care whilst appreciating the changing scientific landscape and furthering understanding of disease, and hopefully ultimately driving improvement in outcomes for patients.
As an NHS doctor, I can see the need for this research first-hand, and understand the impact it has across specialties and settings, as well as its direct implications on the health and wellbeing of our patients.
4. What did you observe in your practice on patients with fatigue and sleep disturbances?
Fatigue and sleep disturbance are an extremely common presentation in both primary and secondary care, especially in patients with inflammatory long term conditions, such as Rheumatoid Arthritis and Crohn’s Disease. Many patients with chronic conditions will experience these symptoms to some degree, and report significant impact on their quality of life. Complicating matters further, we know that fatigue and sleep disturbance are often multifactorial, and are not always linked to disease severity. There is still a lot we do not know about the causes of fatigue. Crucially, as clinicians, we lack objective, dynamic and accurate tools for measuring these symptoms. This makes it difficult to fully appreciate the symptoms patients experience and the effect this has on their lives, and thus target them with treatments. For the patient and doctor alike, this can be frustrating and is doubtless a barrier to improving care. This is why IDEA-FAST is so important.
5. Where do you think IDEA-FAST will make a difference? Where it will be most impactful?
I think IDEA-FAST will make a long-term impact in understanding how sleep and fatigue affect the day to day lives of patients with inflammatory conditions. The key to IDEA-FAST is the inclusion of patient reported outcomes (PROs), enabling us to ‘translate’ the vast quantities of numerical data into the lived experiences of patients. This gives us detailed insight into the subjective individual experiences of our participants, whilst providing objective multi-parameter data that tells us how their bodies respond to fatigue.
6. Currently we are in the middle of the Clinical Observation Study. What are the next steps and milestones to achieve in the project? What challenges do you foresee?
Once sites have gone through a couple of technological use period (TUP) cycles with the patients, confidence is improved and hopefully technical challenges addressed. And then obviously hitting recruitment targets would be an important milestone. As for challenges, I think the greatest challenge is the complexity of the trial. We’re not measuring one or two parameters, we are measuring dozens of parameters with multiple devices and multiple data forms, which greatly increase the complexity. Logistically, again, the trial is complex and necessitates tandem coordination of recruitment, device movement, follow-up and data collection.
Having read the report from the pilot study, it is great to see so many challenges overcome. Perhaps the one that remains greatest is maintaining participant confidence – the devices do not provide live feedback, and many are anxious to know that they are working as intended, a testament to the altruism of our participants.