With a background in paediatric care and nearly two decades of research and regulatory experience, Elin Haf Davies, CEO of Aparito, founded the company to help rare disease patients get access to treatments. She talks to RARE Revolution about how COVID-19 has made remote patient monitoring a priority and ​about Aparito’s truly patient-centric approach

CEO Series: meeting the beating hearts behind the RARE brands

1.

What made you want to move into the wide world of rare disease, and then specifically Aparito and what did that journey look like?

I started my career at Great Ormond Street Children’s Hospital, which meant that nearly all the patients we cared for had one rare disease or another. I started in neurology, then neurosurgery before moving to neuro-metabolic. There I got involved in supporting children recruited to clinical trials, often when this was the only hope left available to them and their families. This triggered my passion to complete my MSc and PhD, and later propelled me to work at the European Medicine Agency, regulating the plans for paediatric clinical trials.

Aparito was never planned, but an end result of 18 years working with children and not seeing the change in remote patient monitoring and the ability to convey disease impact in a way that was meaningful and easy for children and their families. 

2.

What do you anticipate will be the biggest challenges and opportunities for your organisation in the next two years?

​Covid-19 has changed the need for remote patient monitoring from a nicety to a necessity overnight. But it also brings a lot of uncertainty and new challenges. It therefore feels that we have a very narrow window of opportunity to mould or create a new business as usual that works better for all patients. IF we get it wrong, I dread to think what we’ll do. 

3.

What is your proudest moment in your career thus far?

That’s a tough question. Graduating with a PhD was very special on a personal level. Taking a patient to the theatre play to celebrate her 18th birthday when we had worried whether she would live into adolescence was very special. Being appointed the Chair for Metabolic Support UK. But it’s probably being able to celebrate Dr Emma Foottit’s PhD graduation after our row across the Atlantic Ocean had funded her research in PNPO (a very rare metabolic disorder). That was definitely very special indeed. 

4.

What and who are your personal and professional inspirations and why?

​There are so many. All the patients and families that battled on through clinical trials. Florence Nightingale and Betsi Cadwaladr as strong early nursing roles figures. Dame Steve Shirley as a female entrepreneur who was way ahead of her time in the tech industry. And personal friends Vanessa Sloane, Pip Hare, Karen Higgins and Dame Inga Beale who are all achieving amazing things today in their day to day lives. 

5.

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

Go for it! It’s a very special community. Even at a global level, it’s very close knit and you form relationships that are lifelong. But most importantly, you really get to see the impact and value of your work first-hand. Each rare disease community is unique in their own way, but the solidarity is palpable. 

6.

Do you think the government does enough for the rare disease community at a local and central level, and what gaps do you see currently or emerging?

7.

What would you say are some of the biggest motivators for your employees?

​A few of my team have been touched by a rare disease themselves, and so they have their own motivators. Our team changed a lot during lockdown. We went from nine to 20, with three of the original nine leaving. And I can honestly say that I am so proud of how we all gelled as a team under lockdown. My team now is highly talented, with a work ethic and passion that means that they motivate themselves and each other without me. We introduced OKRs (objective, key results) throughout the company and have talked a lot about imbedding core values and principles over the years, I sense that we’re now really living and breathing them. 

8.

What are the toughest parts of being a CEO, and conversely what are the most rewarding? 

​Being a CEO of a start-up is a very lonely place at times. You’re often caught between staff, clients, investors and the bank balance. People love the idea of a start-up but not what the reality of creating one means. But the most rewarding is the ability to carve out a completely new path – and that’s very motivating. 

9.

What would be your one wish for Aparito for the year ahead?

In today’s uncertain times, I would say survival. I never take it for granted or assume that it couldn’t all be lost or taken away with a blink of an eye.
 
But beyond that I would wish for positive global impact on supporting patient care. We’ve just launched our Patient Group Accelerator to co-create digital endpoints and outcome measures that are important to them. I can’t wait to see how we get on. 

10.

If you weren’t CEO of Aparito, what was Plan B?  What did your 10-year-old self want to do as a job?

​The 10-year-old me always wanted to be a children’s nurse. My childhood aspirations never dreamed of anything other than being a children’s nurse. I had however imagined that I would be working in Africa for Red Cross, Gavi or Save the Children. I had volunteered for Save the Children in Lesotho four months after finishing school. Other life events got in the way and distracted me from that, but I still think I might one day go back and work in Africa as I absolutely love being under the African night sky.