The ‘nautical nurse’ who set sail to improve clinical trials

After her time as a children’s nurse and charitable sailing achievements, Elin channelled her resilience to improve clinical trials for patients and families.

“Success is a lousy teacher. It seduces smart people into thinking they can’t lose.” Many entrepreneurs will agree with this wisdom from Bill Gates, but it has certainly been true for Elin Haf Davies: it was when she was at her lowest ebb that she discovered her greatest passion and the confidence to build a business.

A self-confessed ‘tearaway’ at school, she had nevertheless found rewarding work as a children’s nurse and an expression for her competitive side playing rugby. She made it as far as the Welsh senior squad, but had been abruptly dropped without securing her first full cap. She had also recently divorced. Rather than wallowing, she decided to row across the Atlantic.

Her and her fellow ‘nautical nurse’ braved 77 days at sea in a 24 foot boat. Apart from the physical deprivations, which were myriad and extreme, she developed an enduring love of the sea. So much so that she went onto be part of the first all-female crew to row across the Indian ocean. She then sailed across the Pacific and then, for good measure, across the Atlantic again.

In the process, she raised huge amounts for charity. Her first trip raised £190,000 for metabolic research at Great Ormand Street Children’s Hospital. Subsequent trips raised another £100,000 for good causes such as the Noah’s Ark Appeal, which supports a children’s hospital in Wales, and Findacure, that looks to find cures for rare diseases.

Her achievements were acknowledged by the Welsh Assembly with an award for ‘Service to Wales’. In 2012 she carried the Olympic torch through Bangor in recognition of her sporting and fundraising achievements.

A new confidence

These trips gave her the confidence to feel she could do anything. “Having been a bit of a delinquent, I graduated with a PhD from University College London. Later in life I also decided to set up my own business. As a children’s nurse I’d specialised in children with rare diagnoses.

Clinical trials were their only hope. However, they needed to be able to swallow tablets or comply with complex tests. The parents were saying that they didn’t see the relevance for their day-to-day lives, while the children were saying that the tests were invasive, painful and traumatic. It made me realise that clinical trials weren’t focusing on what was important to patients.”

Her specialist area was in gait and ataxia. The results could be influenced by fatigue and severe stress. “The kids would be flying in from a different country, possibly every three months, exhausted, stressed, in a new environment. For the results, it was difficult to separate noise from their real disease presentation, so the trials weren’t as effective as they should be.”

Elin decided that there must be a better way to run these tests, get better data for the pharmaceutical and biotechnology companies and ease the pain on children and their families: “I thought, ‘let’s find a way that doesn’t hurt.’ That was the foundation of Aparito.”

A tough journey

If she thought rowing across the ocean was tough, she admits it was far easier than running a business: having worked as a children’s nurse and then as a civil servant for 18 years (she spent time at the regulator), the start-up, entrepreneurial world was not an easy switch: “I had never worked in industry. Being absolutely honest, I don’t think I’d even heard the word entrepreneur or start- up. I just realised I wanted to do it my way and finding a legal entity, that was my motivation rather than wanting to be an entrepreneur. When I started to learn about entrepreneurs, they all seemed to be about 24 in a beanie hat, not in their mid-30s!”

Her first challenge was funding. She was used to raising money, having brought in hundreds of thousands for charity from her rowing adventures, but this was a different challenge. She focused her attention on socially-responsible investors. “They could focus on the impact and value, not just metrics of pricing and money. That affected my narrative.” Her husband provided plenty of support, helping fill in when she didn’t have the money to pay staff.

The business of clinical trials is hugely complex and it helped that she had real subject matter knowledge of the area. She knew how clinical trials worked, the ethical considerations, plus the regulatory and compliance obligations.

She understood the delicate balance between pharmaceutical companies, patients and clinicians. “The pharmaceutical companies are the payers, patients are the users, clinicians use the data. We needed to work with different people.” She also understood how technology could help bring people together.

“I had to become a jack of all trades. I had to learn everything from intellectual property law to human resources to technology. It has broken me a couple of times. It’s not been an easy journey at all and it’s taken its toll. It’s had its quite upsetting moments. I needed to develop a thicker skin. The ability to bounce back has proved really important.” Her ocean adventures have helped with this resilience.

Covid

Covid has helped put a spotlight on the way clinical trials are conducted. While her initial work was with neurodegenerative disorders, she now had other studies running, including two into long Covid. She adds: “For us, Covid pushed what we were trying to do from a nice-to-have to a necessity. We were trying to change habits and culture. Covid has pushed the door open and hopefully the genie is out of the box now.”

The group has now raised a total of $2.9 million in funding over three rounds. This has allowed expansion into a range of new diseases, though the group’s largest focus is likely to remain neurodegenerative disorders. Elin is far closer to her ambition of revolutionising clinical trials, making them more user-friendly for patients and more effective for clinicians.