With a background in nursing, Juliet Hulse followed her passion for research and is the patient engagement officer for Illingworth Research Group. She discusses her responsibility to ensuring a patient centric approach, her commitment to patient groups and the importance of the patient voice in the success of a trial

​PEO series: meeting the beating hearts behind the rare brands

1.

How new is the patient engagement role in your organisation, how has it evolved and what are your hopes for the role in the future? 

2.

​What does a typical week entail for you, and are there any specific projects you can tell us about? 

My week starts with a review of current Requests for Proposals (RFP). Some protocols may already mention a remote decentralised approach with off-site visits included in the schedule, however other protocols may need further discussion on remote visits to be included within the patient program. It may be a rare disease indication where a collaborative approach is necessary involving not only mobile research nursing but also our concierge service PatientGo, medical imaging or some technology input.

I oversee a team who will work together to suggest areas where the indication and trial may benefit from the inclusion of decentralised remote visits. Reaching out to patient groups to understand the patient population is imperative. We are working on several Duchenne muscular dystrophy studies currently, and I will often ask the project managers on these studies about how they are progressing and any challenges they may be facing, collecting feedback from advocacy groups to apply to lessons learned. We gain very rewarding feedback from families impacted by our nurses’ visits and this is always encouraging to share!

The current pandemic has had a significant impact on patients and their families who are taking part in research trials but who may be shielding and vulnerable. The need to find solutions to enable studies to continue has encouraged regulatory authorities to rethink the design of studies integrating remote visits and telemedicine into studies. I often find myself working across various time zones with several colleagues around the world as far as Australia! 

3.

What were your personal motivations to taking up a role in patient engagement? 

Quite simply it was my desire to ensure that all patients should have the ability to take part in clinical trials, and to guarantee that we make their journey as straightforward as possible during a study. Paediatric studies are particularly important, roughly 50 percent of rare diseases affect children, 30 percent of whom do not survive past their fifth birthday.

4.

What makes the role of patient engagement officer important to your organisation? 

Ensuring Illingworth understands patient engagement and why patient engagement really matters is fundamental to our culture and growth. Engaged patients are more likely to adhere to study requirements, increasing study retention.
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Patient engagement is also a strong feature of the professional standards for clinicians enshrined in the International conference of harmonisation – good clinical practice (ICH GCP). 

5.

In your role, how do you ensure the patient voice remains central? 

​Listening to patients, ensuring their involvement in decisions, providing information to patients with explanation and empathy are fundamental. 

6.

How do you reconcile operational business needs with elevating the patient voice?

I feel it is important to focus on measurable success from the studies perspective by incorporating the patient into the trial design from the start. The patient voice can contribute to many key areas, and overall improve the delivery of care in the future. Greater recognition of the value of the patient voice will allow a redirection of clinical practice to ensure the priorities of CROs and biotechs are aligned to the needs of those experiencing the disease.

7.

What are the most rewarding aspects of your role?

​Feeling that we are really making a difference to a patient who is taking part in a study, listening to their challenges and needs and being able to offer solutions that mitigate some of those challenges. 

8.

What is your proudest moment in your career thus far?

​Apart from achieving my initial nursing qualifications, speaking at conferences in the US and Sydney gives me a sense of pride.

9.

What advice would you give someone considering working in the rare disease space?

​Although hugely challenging at times, working in this area is also very rewarding. Obtaining a deep understanding of the rare disease process can be difficult, families often go through a diagnostic minefield given the clinical and genetic heterogeneity of rare disease. Commitment to patient communities and collaboration within multidisciplinary teams are a driving force behind drug development and provide crucial insight for biotech. Every single patient counts!

10.

​If you weren’t a Patient Engagement Officer of Illingworth, what was Plan B?  What did your 10-year-old self-want to do as a job?

Obviously the 10-year-old me wanted to be a nurse! I used to wrap up my teddy bears and dolls with bandages and steal my brothers Action man to perform operations on!

I have been fortunate enough to enjoy every aspect of my career from the first day I started my training to my current role. I initially worked on a busy coronary care unit and cardiology ward, but over the years realised my interest lay in research, initially in cardiology trials.
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I have been privileged to be able to travel extensively and understand aspects of off-site research nursing globally, including Egypt and Australia. Maybe a travel writer….