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,
Elin 
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.
 

Tuesday, 21 June 2016

TEAM APARITO STORMS INTO LINE HONOURS

On Wednesday 15th of June Team aparito took line honours in the Three Peaks Yacht Race. The first time that an all female crew had EVER done so. I still can’t stop smiling when I think about it.

Pip Hare our amazing Skipper has already written a brilliant blog accounting our adventure, so I’m not going to repeat any of that (but please do read hers).

But I do want to share some personal reflections of my own on the race. Mainly to thank all the people that made it possible.

In my blog before the race I explained how I wanted to use the race as an opportunity to fly the flag for women in sport, Wales and rare diseases (three things that are usually in the minority) and my hopes to do all three of them proud. I am massively relieved that we accomplished that.

Our fine ship Nunatak has the logo for Findacure proudly displayed on the hull, and we used the opportunity to raise money for them too. A massive thank you to all those that have already donated to this great charity. The link is still open, so if you can please do donate.  I am always very grateful.

We also had the Welsh flag flying from our backstay, and the opportunity to team up with fellow Welsh adventurer Lowri Morgan was a long time ambition which couldn't have worked out better. That Lowri and my long time friend Jo Jackson got on so well was just perfect. Indeed I could not have imagined how well all five of us got on. Bringing five fiercely strong, independent women together always has an element of risk to it. And unfortunately I know too well that it can go horribly wrong – with personalities clashing and more. I need not have worried about any of that with our fabulous team of five! And I can’t wait for the three part documentary sharing our experience to be shown on S4C next month, and on Channel 4 soon after.

The fact that all five of us are highly experienced adventurers / endurance athletes means that being female shouldn't matter. But inevitably it does. We were the fourth all female crew to compete in the 39-year history of the race, and the first to take line honors. That is worth celebrating. Sailing does offer an unique arena where men and women can compete equally, and where brute force or strength is not the only winning factor. The intensity and the pace of the sailing meant that I was merely playing catch up most of the time. Frustrated at not being able to operate at the same level as Pip and Nikki I had to remind myself that I was still a mere novice in sailing terms compared to them, and decided instead to relish on the opportunity to learn from the best. I had asked Pip and Nikki to be part of the team because I knew they were phenomenal sailors, and it was great to watch them demonstrate that – inspiring me to consider where my sailing ability could extend in years to come.  

The list of people that I have to thank for making this a truly once in a lifetime adventure is long, as is always the case in these events. So, in no particular order:
  • ·      Thanks to my colleagues at aparito for believing in this enough to sponsor the event, and covering for me while I was away.
  • ·      Thanks to all our other sponsors Keela, SubZero, Primal Pantry, Mountain House, Oes Gafr Eto for amazing kit and supplies which made our adventure far easier.
  • ·      Thanks to Wendy and the HSBC rowing club for lending us the oars and seats.
  • ·      Thanks to Sian and family for hosting us in Barmouth and driving us around everywhere we needed to be at the race start.
  • ·      Thanks to all my family that came to cheer us off at the start line. Diolch!
  • ·      Thanks to Mike and Pam Jaques for shore crew support in Whitehaven and Fort William, and for keeping Frosty company.
  • ·      Thanks to Pip, Nikki, Lowri and Jo for being phenomenal team mates.
  • ·      But most of all thanks to my Frostie for chartering us the boat, prepping it beforehand, delivering it up to Barmouth and back down from Fort William and for generally being my No 1 fan. Seeing his pink jacket at various land marks along the way made me smile every time. With help from your Dad (Roger Frost) you made it possible, and I was very proud to reward your hard work and trust in us with bringing home the trophies: 
The Daily Telegraph Trophy (first yeacht to finish)
Meirioneth Cup (Second yacht to finish under handicap) 
Flicka Cup (Fasstest team third leg, IRC sail + run)  


Tuesday, 7 June 2016

TEAM APARITO TAKES ON THE THREE PEAKS YACHT RACE

The Three Peaks Yacht Race is one of the oldest and most remarkable multi-sport endurance races in the world, and one that I’ve wanted to compete in for a very long time.

Teams of five per yacht sail from Barmouth on the west coast of Wales up to the finish in Fort William on the west coast of Scotland, stopping off at Caernarfon and Whitehaven on the way. During those stops two of the crew are required to climb each of the highest mountains in Wales, England and Scotland, which is equivalent of three marathons.

I’m thrilled to bits to be competing this year as part of team aparito. Being part of such a phenomenal crew is rather intimidating to say the least. Pip Hare and Nikki Curwen are both amazing high profile off shore solo sailors, and both of them have completed in the mini Transat. I’ve always had great admiration for them both. I’m also finally getting to team-up with fellow Welsh adventurer Lowri Morgan, which has been a long time ambition of mine. Lowri is a legend ultra marathon runner with many successes to her name. And most excitingly I get to join forces with my old crewmate from my Indian row, Jo Jackson. Since that row Jo has gone to do amazing things, and I can’t believe how lucky I am to get the opportunity to compete with her again.

I’m not only excited to be taking part in this race because it’s an opportunity to get the adrenaline pumping again, and to experience a new adventure (which I always love), but this time it feels even more special. Primarily because I get to fly the flag for women in sport, for Wales, and for rare disease. Three things that’s often in the minority. When you’re in the minority it means that you have to fight harder for a fair chance, and fight harder for equal recognition. When you’re in the minority you often have to shout louder to be heard, or find a different platform to share your story.

The Three Peaks Yacht Race will therefore be a platform for me to fly the flag for three issues that are very important to me. I hope that I do all three things proud.

To support rare diseases I will be once again raising money for the charity Findacure. A charity that empowers patient groups and support drug repurposing – two causes I’ve been championing throughout my professional career. If you can, please do donate.  I am always very grateful.

The race starts 2pm on Saturday, and you can track us live via this link. We will also have an on board reporter filming our every move, and a documentary will soon follow on S4C and Channel 4.

We couldn’t have funded our adventure without our great sponsors: aparito, Keela Outdoor clothing, sub zero clothing, Oes Gafr Eto, Mountain House Food, and Primal Pantry – THANK YOU ALL! But most importantly thank you to Chris Frost. Like all of my sailing adventures over the last 18 months I would not have been able to do any of them without his support. He might not be on the boat racing with me this time, but he is still very much an important part of the team, as he has the very important role of being shore crew - which means looking after us all in every stop over. Not only that but Chris and his Dad are with Nikki as I type delivering the boat up to Barmouth ready for the start. Thank you Frosty for being my much needed anchor!


Tuesday, 26 January 2016

WHAT A WEEK IN INDIA TAUGHT ME! 

Today is my last day in India. It's been an amazing visit and I've been particularly moved by the tremendous efforts Doctors here go to to find and fund treatment options for their patients. 

Launching @aparitohealth was a particularly exciting personal milestone for me. Patients travelled from afar to use our monitoring devices and smart phone apps. In a country as vast as India remote monitoring with digital / mhealth has even more of a possibility to make a positive impact, and I really hope that aparito can play a small part in making that happen.

As a woman I've also been moved by the efforts made to give girls an equal chance of survival here, and having met some phenomenally successful Indian women on this trip I'm more determined than ever to promote equality for women. 
Like Sheryl Sandberg said in Davos recently, "Men still run the world - and I'm not sure it's going that well! Until we rectify that, everyone will suffer".

When I start to think about the issue on a global scale I get overwhelmed by the scale of the problem, and often end up thinking “there’s just no way I can make a difference”. But then I feel that all women have a responsibility to try to address this issue and all women have one thing which we can all do – talk about it! Talking about it is the first step towards acknowledging that there is a problem. Talking about it makes you and others consider what the issues are. Talking about it is also the first step to finding solutions.

Talking about equal opportunities is never pointless therefore. Talk about it with your partner, talk about it with your children, talk about it with your friends, your colleagues, your peers – everyone. Talk about it in every social circle you find yourself. Not everyone will thank you, and not everyone will agree with the opinion that there’s a problem to be resolved. But like the Australian comedian Tim Minchin elegantly said in his “occasional address” for a graduation ceremony:

Be Hard On Your Opinions
A famous bon mot asserts that opinions are like arse-holes, in that everyone has one. There is great wisdom in this… but I would add that opinions differ significantly from arse-holes, in that yours should be constantly and thoroughly examined.
We must think critically, and not just about the ideas of others. Be hard on your beliefs. Take them out onto the verandah and beat them with a cricket bat.
Be intellectually rigorous. Identify your biases, your prejudices, your privilege.
Most of society’s arguments are kept alive by a failure to acknowledge nuance.

By helping ourselves and others do this, and not just be accepting the status quo we all stand to make a difference.



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