With a desire to help and advocate for patients from a young age, Naomi Litchfield began her career as a paediatric nurse. She brings this invaluable understanding and insight, along with experience of clinical research and rare disease, to her current position as global patient advocacy lead at Bionical Emas. Her dedication to patient advocacy is clear as she talks to RARE Revolution about the importance of her role within the company and in early access programs, and how she ensures the patient voice remains at the heart of everything they do
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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?  

When the Early Access Programs (EAP) division of Bionical Emas was started over three years ago, we began the story with the patient advocacy department. We believed patient centricity was the right foundation for our business model. Three years later, I run a global advocacy department and we are EAP industry leaders. I hope to take advocacy in EAP to the next level now. Increase our thought leadership awareness, educate and support more global patient organisations and ultimately ensure the patient voice is always represented throughout our early access programs and that they are designed with the patient in mind.

2.

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

Every week is different which I love, always working with our advocacy partners on different projects. The most rewarding part of my role is working with rare families and giving them a platform to voice their unique stories. I invite a rare patient, a caregiver or a healthcare professional into Bionical Emas on a regular basis to speak to our company about the impact of their condition on their daily lives and their thoughts/experience on access issues. We have all learnt so much from listening to these powerful stories and having the opportunity to ask questions to influence the design and delivery of our programmes.

One of the projects I am currently working on is a video to explain ‘What is an EAP?’ for patient organisations, healthcare professionals and industry. It is a complex area with different terminology and regulations in each country. Our aim is to create a simple animation video to help people new to early access understand the pathway and purpose of an EAP.

Another exciting project I am absolutely honoured to collaborate on is with Medics for Rare Diseases creating a clinical trial and early access lesson for their 101-training programme.
Daily, I work closely with the EAP operational team to enable patient voice representation within our programmes. This could be training on a disease area and product delivery using my nursing background, discussing real world data collection points relevant to that condition, programme communication plans etc. Where relevant, I also work closely with our sponsor’s patient advocacy representatives to discuss our programmes and define advocacy activities.

3.

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

My brother Ben died of a rare condition and my sister Bryony survived four rare cancers. I watched Bryony grow up in hospital and knew from a young age I wanted to be a paediatric nurse and advocate for patients.

I have had the privilege of caring for many rare patients and their families in Oxford Children’s Hospital where I trained and Great Ormond Street Hospital where I became a senior clinical research nurse caring for rare patients participating in clinical trials and early access programs. I have administered many different investigational medicines and seen the real impact they can have on patient’s lives.

I cherish my 15 years nursing and it has given me a unique foundation compounded by my personal experiences to now passionately advocate for patients and families in my role.

4.

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

Our mission is to positively impact the lives of patients and their families by bringing life-changing medicines to patients all around the world. My role is at the heart of this mission and I am proud to drive it every day and work with such a caring and dedicated team.

The positive impact on the patient is integrated into all our EAP functions from design to delivery. We understand the importance of being informed of the patient community history and the individual patient’s condition.

We really do understand there is often an urgent need for access to investigational medicines and because of this there is a need for transparent, timely and compliant communication with all stakeholders throughout our programs.

5.

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

Ensuring the patient voice remains central to all our work is something I am extremely passionate about. I educate and discuss personal and professional case studies (with consent) but the most powerful and beneficial impact on our team comes from rare patients and families themselves which is why I regularly invite them to speak to our team so they can listen, learn and engage.

I am proud to be continuously driving our company mission, supporting our teams to feel knowledgeable, empowered and to really understand the conditions of the patients on our early access programs and how important the impact of access to the investigational medicine can be.

We have a feedback wall in all our office locations around the world that showcases positive feedback from healthcare professionals and the impact the programs have had on their patients. The team find it extremely rewarding to read these messages and I believe this to be vital to drive our team to regularly show them the positive impact their work is having on patients and their families’ lives.

6.

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

The two things aren’t mutually exclusive. Our mission of ‘positively impacting the lives of    patients and families by bringing life-changing medicines to patients all around the world’ is central to everything we do and drives our business/operational behaviours. We know that if we are truly winning for patients, then the rest takes care of itself. In simple terms, we have created an amazing business by doing great things for patients.

7.

What are the most rewarding aspects of your role?

Working with rare patients and their families, educating on rare conditions and access to investigational medicines to engaged groups both internally and externally.

8.

What is your proudest moment in your career thus far?

Administering a phase one investigational medicine to the first UK rare patient and seeing the positive impact it had immediately on that patient and their family. I will never forget that moment and the effect it had on the family, my team and myself.

9.

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

Go for it! Being part of the rare disease community is so rewarding, challenging, exciting, and emotional. Speak to people working in rare you will soon see what a great opportunity it is. I feel very privileged to work with such inspirational people and really have a positive impact on rare families lives.

10.

If you weren’t Global Patient Advocacy Lead at Bionical Emas what was Plan B?  What did your 10-year-old self want to do as a job?

For as long as I can remember I wanted to be a paediatric nurse, it was my dream job and it came true. However, when I was 10 I didn’t know patient advocacy roles existed and now I have had the opportunity of experiencing both, I’m delighted to say my current advocacy role is the best job I’ve had for many reasons, but mainly because I truly believe I positively impact more rare patients and families.