Saturday, 25 August 2018

I’m down but not <completely> out! 

Crew photo after we made the decision to retire from the race! 
On Wednesday night I retired from the Sevenstar Round Great Britain and Ireland Race after 1740 miles of racing and 10 days 13 hours at sea. With only ~60 odd miles to go to complete the race it was a gutting experience, but a decision I had to do because the race had taken longer than anticipated, and I had to attend a work meeting as CEO of Aparito, a company I founded to develop remote patient monitoring using emerging technologies. 

These days people often talk about the importance of a work:life balance. To quit on a personal goal to meet a professional requirement felt nothing like a good work:life balance. Please believe me when I say that it was a way harder experience than having to fly home from your family holiday lying on a beach in Costa Del Wherever to attend a work crisis meeting, because I had invested so much time, money, emotion and effort into the race. Let alone the disappointment it caused to my crew mates Frosty and Pip.   

As hard as it feels right now I appreciate that I can’t complain too much, and I look back at the last decade with a personal reflection of pride, smiles and a slight disbelief that I’ve been so fortunate to create so many varied and different memories in work and life – personally and professionally. 

February 2018 marked ten years since the end of my row across the Atlantic, an epic adventure, the start of my love for the open seas, and the beginning of what has been an exceptional decade for me. 

Since then I’ve worked hard to balance my love for the ocean and my passion for work in child health. From volunteering briefly for Save The Children in Lesotho 24 years ago, to working clinically at Great Ormond St Children’s Hospital for 12 years, to working at the European Medicine Agency for six years, I have always had a deeply ingrained passion for child health that I never want to lose. But over the last 6-12 months or so I’ve really lost my mojo (yes, this is where you feel sorry for Frosty!). My battery has been running completely on empty, just not able to recharge, and I’ve failed to get much enjoyment or satisfaction from anything I do. Leaving me always questioning everything I’ve done / am doing / want to do. 

I have of course wondered if it’s a classic case of being “burnt out”– after all I have lived on a lot of adrenaline over the last 10 years. But my ocean adventures have become the solace that reinvigorated me many times over the years, and my addiction to adrenaline is what makes me feel alive.  

Founding Aparito has been exhausting and exasperating though. Made even harder because there is no clearly defined finishing line. While I still strongly believe that emerging technology can serve to have a huge positive impact to manage patient’s health, the process of starting a company and addressing all the legal, governance and financial basis means that I’ve been distracted from doing the things that really matter to me. I’ve been sucked into a world which I didn’t even know existed a mere four years ago. I’ve been bitten by commercial-sharks, massively disappointed by individuals I trusted and generally dismayed about how the tech sector in general works (especially the start-up scene). Even my efforts to establish a social impact company was faced with a barrage of disappointments.     

When I completed a large (by my standards) investment round nine months ago to grow the company I couldn’t glean any pleasure or pride from it at all. To the contrary. I had never felt so far from the world of child health where I had a well-defined sense of purpose and a clear vision of the impact I wanted to have in the world.

The global environment really doesn’t help my mood either. Brexit genuinely causes me a lot of anxiety, heartache and sorrow. It makes me feel both helpless and angry. On Wednesday August 23rd the same day that I retired from the race, one of my European friends also left London because of Brexit and the move of the European Medicine Agency to Amsterdam. It makes me so sad I can’t begin to tell you. When people tell me that Brexit is not personal I genuinely wonder what emotionally void planet they live in. Because not only am I worried about the unnecessary damage it will cause to the life science and health sector in the UK but also because of the genuine risk I think it can have on global peace. Trading together is really one easy way to stay friends!  

I recently wrote a list (below) of all that I’ve done and experienced over the last 10 years. Not so much for the bragging rights of “Look what I’ve done” but more as a way of reassuring myself that I can maintain a successful work:life balance and to convince myself that ordinary people like me can achieve extraordinary things with the right level of passion, drive, support and commitment. In a world that seems increasingly volatile and troubled I needed to see that individuals like me can make big things happen. I needed to have hope that things can be changed for the better. 

Competing in the Sevenstar Round Great Britain and Ireland race was my way to detox from the Brexit gloom, and to recharge from the daily grind of growing Aparito. 1805 miles in one of the most challenging sailing races felt like the right option even though I’m not on top racing form at the moment. I knew it was going to be tough, but I had underestimated the combined difficulty of being on a new boat (Class 40) compounded by the rough weather we experienced (winds up to 50 kts). I was so grateful that we had teamed up with sailing legend Pip Hare rather than go two up for this race. She was an immense co-skipper to my husband Frosty. Even going three up for this race and on this boat was a little bit left-field, but for the mood I was in I needed to be 100% sure that I was only going to sea with people that I fully trust and like/ love! Frosty and Pip ticked both of those boxes. Lucky really, as the combination of sea sickness and my inability to helm the boat in that weather meant I felt particularly vulnerable and particularly useless most of the time - merely a tea making stewardess while Frosty and Pip worked extremely hard to keep us moving along the course. They did such a great job that we were lying in 4thin class and 6thin line honours when we retired. I was also immensely proud that my husband decided to carry on completing the lap even though he knew that we would not be ranked in the race. He had to finish what he started regardless, and I completely get and respect that. 

People often say that life at sea must be dangerous, difficult and challenging. Yes, it can be, but in all honesty, there are elements of life at sea that I find easier than life at land, even in the storms and bad weather, even when the banging of the hull against the waves is deafening in your ears and vibrates through your bones, even when you’re so sleep deprived you’re too tired to work out which bearing you’re sailing to. But at sea all you have to think about is eating, sleeping and staying safe. It’s just the primal sense of staying alive! For racing / cruising sailors like me it’s pleasure and a life luxury to be able to self-select and put ourselves in those environments. We only need to think of the refugees drowning daily while seeking a better life to remember that. They are the real heroes, not us sailors.  

To feel the sea breeze on my face and to watch the sails power me through the water effortlessly (compared to a hard-fought tug on an oar!) is a reminder that I have the freedom to live a life of my choosing, which I can create as I wish. A fact which is too easy to forget some days, especially today when I feel I’ve sacrificed a personal life goal for a work life demand. 10 days sailing around the coast of Ireland and the UK was a great opportunity for me to reflect on what I want moving forward, for work and life, and even in between vomiting and sleep deprivation I was able to see clearly on what I need to do differently from here on. When I’m a bit more fully recovered I’m also hopeful that I’ll also find my mojo again. 

Accepting failures are an important part of growing. And while I’m not sure whether retiring from the race constitutes as failure (the definition is very personal and changeable) I know that I currently feel proud and gutted in equal measures. For now, I’ll put it down to failing mindfully. 

Sport / Adventure 
London Marathon. 
Start row across the Atlantic 
Start new role as Scientific Advisor implementing Paediatric Regulation at European Medicine Agency (EMA).
Davies EH, Erikson A, Collin-Histed T, Mengel E, Tylki-Szymanska A, Vellodi A.
J Inherit Metab Dis. 2007 Nov;30(6):935-42

Davies EH, Surtees R, DeVile C, Schoon I, Vellodi A.
J Inherit Metab Dis. 2007 Oct;30(5):768-82

Completed row across the Atlantic. 

Failed attempt at running 6 marathons in 6 days in the Sahara.  

Standard Distance Triathlon
Select item 1894035013.
Davies EH, Tuleu C.
J Pediatr. 2008 Nov;153(5):599-604.  
WHO Expert Committee.
World Health Organ Tech Rep Ser. 2008;(950):backcover, vii-174.
£190,000 raised for Great Ormond St Hospital funding research to value of Vitamin B6 to manage neonatal seizures.  
Row across Indian Ocean. 
Olympic Distance Triathlon.
Loch Ness marathon. 
Initiated multi-product, multi company study design for Gaucher disease, now also adopted by FDA. 
Two Guinness World Records.
£30k raised for Breast Cancer Care UK. 
Snowdonia marathon 
Graduated with a PhD from University College London.

Davies EH, Ollivier CM, Saint Raymond A.
Eur J Clin Pharmacol. 2010 Nov;66(11):
Published my first Welsh book ‘Ar For Tymhestlog’
Learning how to sail and competing in RORC season incl. Fastnet aboard La Reponse
Davies EH, Mengel E, Tylki-Szymanska A, Kleinotiene G, Reinke J, Vellodi A.
J Inherit Metab Dis. 2011 Oct;34(5):1053-9. doi: 10.1007/s10545-011-9347-z. Epub 2011 May 28.

Davies EH, Seunarine KK, Banks T, Clark CA, Vellodi A.
J Inherit Metab Dis. 2011 Apr;34(2):549-53
Published my English book ‘On Tempestuous Seas’. Launched at National Geographic, London.
Sailed across the Pacific Ocean from Qingdao to San Francisco as part of Clipper yacht race 
Gave up my registration as a Children’s Nurse due to not being able to maintain sufficient clinical hours. 
S4C documentary ‘Hwylio’r Byd’.
Published my 2nd Welsh book ‘Bwyddyn y Fflam’.
Carried the Olympic Flame. 
Fastnet fully crewed on La Reponse
Resigned from EMA to start on my own consultancy company, having evaluated 100+ paediatric investigation plans and waiver requests 

Hiking unaided all the way across Costa Rica from the Atlantic Ocean to the Pacific Ocean. 
Appointed Research Fellow at Bangor University and Associate Fellow at CASMI 

2H Fastnet with Frosty followed by sailing across the Atlantic Ocean two handed, completing the RORC sailing season with a 2ndoverall.   
Founded Aparito with seed investment from Bethnal Green Ventures and became CEO shortly after. 

Caribbean 600 2H sail with Frosty, finishing 1st in class.

3 Peaks Yacht Race – taking line honours. 

Aparito technology deployed in America, India and UK.
Kelly LE, Davies EH, Saint-Raymond A, Tomasi P, Offringa M.
Arch Dis Child. 2016 Oct;101(10):962-7
TV Documentary on S4C and Channel 4 (‘Ras y Copa’).

Married Frosty! 
2H Fastnet with Frosty 
Opened an Aparito office HQ in Wrexham Technology Park, north Wales. 
Davies EH, Fulton E, Brook D, Hughes DA.
Br J Clin Pharmacol. 2017 Jul;83(7):1595-1601

*** Sailing Round Great Britain and Ireland *** 
Closed an investment round for Aparito, and the technology deployed in South Africa. 
Aparito now a team of 10. 
Ambassador for Team Wales in the Commonwealth Games.
Carrying Commonwealth torch. 
Ambassador for Wales Year of the Sea.

*** not completed!

Wednesday, 8 March 2017

International Women’s Day 8th of March 2017

Today I had the honour of joining 200+ highly successful women in Berlin to celebrate International Women’s Day in an event organised by Omnicom Women #OmniwomenGermany The opportunity to be at a global event where women support and encourage other women is something that I particularly feel excited to be part of.

It’s part of an immense week of celebrations where I also got to join ‘Women in Wearables’ on a panel discussion at the Wearable Tech Show at the Excel in London and also speak at WIRED Health at their annual conference. At a time where only 9% of medtech founders are female I take tremendous amount of pride and honour in flying the flag for women and girls in STEM.

I know so many amazing women that I want the world to see, but I must shout out especially for the mothers of children with rare disease - they are courageous beyond belief. 

I always feel extremely privileged to be given the opportunity to share my personal story or professional work because I appreciate that it is not an opportunity given to everyone. I also love the opportunity to hear about other people’s stories and experiences. It propels me forward to do more and push further in whatever I’m working on at that time, personal or professional. Hearing other women’s stories of overcoming adversities and achieving success is so uplifting that I can’t stop celebrating every woman’s individual success.

Sometime when I admire other women’s achievements a little bit of the green eyed monster does creep out, where I wonder “how would it feel to do that?”. But not with a jealousy that makes me think “I wish it was me not them” – only in the “WOW! How cool is that!”.

I don’t see it as fewer opportunities for me.  It’s certainly not a pie with only limited pieces to go around.

International Women’s Day always makes me stop, pause and reflect of how I feel as a woman in society today. How I see women’s role in society and which female role models do I see around me. This time to reflect also makes me wonder how we as women treat each other.

Thankfully I have a strong enough personality not to have ever experienced being bullied in my life. However I have at times gone to sleep with tears in my eyes over the way that other women have treated me. It has been women (never men) that have slut shamed me; it has been women (never men) that have ignored me or excluded me in social circumstances, and women (never men) that have played the silence game with me.

Yes, I’ve had men comment on my body, my looks, and my appearance in a way that objectifies me. But never in a way that has excluded me from conversations or excluded me from opportunities. 

We can never expect to like all the people that we come across in life. But to be purposefully rude or hurtful or insulting to someone for no reason other than the fact you don’t like him or her to me is beyond comprehension to me. I also accept that my personality is Marmite like, people either love me or hate me. But like every other single human being on the planet, regardless of gender, sexual orientation, ethnicity or religious believes all that I ask is that I am treated politely and with respect. It is always how I try to treat others and I can never comprehend in today’s troubled world where hate is emerging as an accepted norm, why this can’t be considered acceptable.

Yes, I am opinionated. But I also seek to hear other people’s view - to try to understand where they come from. At the event today a German police officer with extensive experience and knowledge in negotiating people out of hijacking situation talked about the value of negotiating skills. He specifically talked about negotiating in the Trump era, where confrontation and competition is the norm. Is the rule! I struggled to accept that we must act and behave in the same way as the person that we’re negotiating with, but could understand that to walk away is to loose out completely.  

Women are just not conditioned to treat competition and conflict in the love it and live with it way that is a norm for many leading male figures in today’s society. And sometimes I feel that we should push to create a different basis for negotiation rather than join the table to negotiate on those terms. But not being at the table is to give-in before the negotiation starts even.

Maybe it’s a coincidence that on IWD this year I’m in German where Merkel is one of the leading female politician that I have complete respect for the way that she has conducted herself.  I know that being here today, amongst so many inspirational women that genuinely want to see other women succeed along side them was just the remedy that I needed at a time where I’ve been challenged to see the good in people. As always I’ll continue to do the best that I can, in the way that works for me.

Saturday, 25 February 2017

Celebrating two years of using wearables and specific mobile apps to deliver patient monitoring outside of the hospital.

Reflection from Founder & CEO

I couldn’t be prouder of what we have achieved as a team at aparito over the last two years. In partnership with many great individuals and organisations, we have initiated five studies, in four different diseases across three countries. Through our work to date, I am more convinced than ever that our tech solution will go a long way towards improving the conduct of clinical trials and the effectiveness of managing routine care for paediatric patients and people living with rare diseases in particular. As we approach Rare Disease Day on the 28th of February, we look forward to continuing our work in the rare disease community and to collaborating further in order to make a positive impact to patients and their families. 

With sincere thanks to all that have helped us so far - this is very much a collaborative effort.

Warm Wishes,
Our Studies 2016

In partnership with National Tay-Sachs & Allied Diseases Association, aparito is being used at the National Institutes of Health (NIH), in America to investigate the natural history of Gangliosidoses (GM1, GM2). This investigation started in August 2016.

Newcastle Upon Tyne Hospitals are using aparito to monitor patients with Juvenile Idiopathic Arthritis between hospital visits in a POC study. This began in November 2016.

In partnership with Niemann-Pick UK and International Niemann Pick Disease Alliance, aparito has been contracted by Actelion Pharmaceuticals to monitor patients with Niemann-Pick Type C (NPC). This study began in February 2016 at Great Ormond Street Hospital and later at Central Manchester University Hospitals NHS Foundation Trust.

The Gaucher Association UK collaborated with aparito to develop a disease specific app for patients with neuronopathic Gaucher Disease to report their own experience of their condition. This was funded by Genzyme and Shire and began in June 2016 at Central Manchester University Hospitals NHS Foundation Trust.

The Lysosomal Storage Disorder Society collaborated with aparito to investigate remote monitoring of participants with Gaucher disease across India. This user testing spanned a month from January 2016 and will initiate again February 2017.

Our Awards 2016

aparito was named by Nesta as 1 of the 50 most radical-thinking organizations solving problems in the health system to improve the lives of individuals in the UK and beyond.
As Mentioned in: The Guardian, "More of the Best New Radicals 2016"

aparito joined Velocity Health as a one of its 2016 start-ups dedicated to developing technologies that support individuals struggling with chronic illnesses.

aparito was identified as a high-impact, high-potential start-up by MassChallenge UK, a start-up friendly accelerator focusing on improvements to the health of society.
Welcoming to the team

Dr. Ian Radford
Executive Director, Software and Analytics, May 2016
Ian has been working in software development for 20 years following on from academic research in the areas of Machine Learning and Artificial Intelligence. Ian brings a culture of rigour and professionalism, along with modern lean methodologies.  By automating deployment and testing to the maximum degree we will streamline our development pipeline to maximise efficiency, releasing valuable resources to allow ground breaking use of Machine Learning with wearable technology, whilst at the same time providing a simple, clean and intuitive user experience for our clients.

Chris Tyson
CTO, March 2016
Chris comes with a wealth of experience in the Pharmaceutical sector focussing on the design and delivery of IT projects for Regulatory, Drug Safety, Clinical Development and Supply Chain clients including Astellas, AstraZeneca, GSK and Cancer Research UK. Chris comes from a software development background and holds an MBA from Manchester Business School.  Chris will lead the transformation of the current aparito technology stack to meet growing customer requirements and deliver full regulatory compliance under Computer System Validation.
Learn more about aparito
Podcast via Share Impact - 21 January 2017
aparito explained by Founder & CEO, Dr. Elin Haf Davies - 2 April 2015
Thank you for your continued support of the aparito mission.
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