Sunday 19 July 2015

aparito: six months on

The last six months has flown by at a pace that I could not have imagined, and aparito proudly completed our BGV Accelerator programme at the launch night in April (watch the action here ) 

More recently we were awarded the UnLtd Fast GrowthAward, and a place on the Angel AcademeWe have also been nominated as an IBM Global Entrepreneur and allocated pro-bono legal support by Hogan Lovells International LLP. We feel extremely thankful for such partnerships and opportunities. All of which offer use much needed support and mentorship that will allow aparito to grow.

Our greatest success to date however is our partnership with the Niemann Pick Association UK to create a disease specific phone app to match with a wearable to measure ambulation in children. Actelion Pharmaceuticals funded our work, and our proof-of-concept study is now set to start at Great Ormond St Children’s Hospital this autumn. This partnership for us truly illustrates how we wish to develop and grow – directly from patient group engagement and direct patient feedback.

But for all our achievements, we’ve also experienced a fair few challenges. For every step we’ve taken we find out that there are 100 more steps that we need to take that we didn’t know existed.  And for everything we’ve learnt we realise that there are a 1000 more things we need to learn. But overcoming the challenges is what makes growing our social enterprise even more rewarding for us.

Our targets are clearly defined - extend our wearables and apps into  two new diseases every year for the next three years. And build a direct relationship with the NHS as our main customer as we’re convinced that our service will be of significant economic value to the NHS. Trial studies have shown that when people manage their health with the help of the internet there are substantial improvements, including a 45 per cent drop in mortality, and a 14 per cent drop in elective admissions. These numbers are extremely convincing. My background in paediatrics and rare diseases means that I’m passionate about making sure that these traditionally orphaned groups get to benefit from such opportunities too.

Historically both groups lag behind from benefiting from research and innovation. But children should be protected through research, and not from research. And rare diseases also have a right to a voice and a chance to have drug discoveries that will benefit them.

There are nearly 7,000 different rare diseases, affecting over 30,000,000 people in Europe, 50% of which are children. These are the millennials – the first generation that will be more technically savvy at a young age than no other. It only makes sense therefore that this generation will be the first to adopt and embrace the opportunity to utilize digital health technology in a way that they use technology for every other aspect of their lives.

Our ultimate goal at aparito therefore is to self-empower young patients and their family to direct the needs of their own disease management. By providing a means for patients to monitor and report their symptoms passively and remotely we aim to reduce the need for unnecessary hospital visits and painful tests – saving those for when it’s absolutely essential. But most importantly, by generating data about the functional and emotional aspect of living with a disease, and providing such data analytics in a meaningful way to other stakeholders; patients and patients groups can be given a voice to illustrate and campaign for what they need.

It’s still extremely early days, but we’re even more passionate about the journey ahead.

Elin Haf Davies | Co-Founder

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