New NS software app and Roadshows
Welcome to our first newsletter!!
NeST has been very fortunate to be awarded a grant from the Wellcome Trust to create a software application ‘app’. Wellcome Trust is a research charity based in London that was established in 1936 with legacies from the pharmaceutical magnate Sir Henry Wellcome to fund research to improve human and animal health.
Some of you may say what's an ‘app’?
The word "app" is an abbreviation for "application." It's a piece of software that can run through a web browser or offline on your computer, and on a smartphone phone, tablet or other electronic devices, including smart TVs and smart watches. Apps may, or may not have a connection to the Internet. So if you did not know, I hope this gives you an idea of just what an app is!
In order to work effectively with much of the very complex NHS system which can be difficult to navigate, we needed to find the best solution long term, so not being costly both to develop and implement, but also be sustainable long term too. After much discussion it been decided to use the popular and very useful ‘Patient View” system and add our on Nephrotic Syndrome INS app. ‘Patient View’ allows patients to access their medical data and the new app will allow additional info to be imputed. This will help clinicians, nurses and researchers monitor NS as people live with it. It will for example help to see just what is happening during a relapse. As always, the aim is to seek positive outcomes for treatment and develop new therapies and of course the elusive cure.
Patient View https://www.patientview.org/#/ is supported by the ‘UK Renal Registry’.
A group of ‘Young Ambassadors’ are helping to develop this on-going ‘app’ project that will be rolled out across the UK in time. To help launch this new app development and gather patient views and ideas to improve the app – a series of Road Shows will take place over the next 18 months around the UK.
Each Road Show will gather feedback from patients and carers on what features would be beneficial and most important to use as daily tools to map their journey living with Nephrotic Syndrome. We will build up the specification with your help. Once the app has been fully developed it will be demonstrated on how it works and why we should be using it. We will also explain why specific data collected will be important for Nephrotic Syndrome research.
The app is not just for young people, but anyone with NS whatever their age and hopefully as many people will use it as possible. However for some of us apps may seem rather modern and a little scary. They need not be at all and the Road Shows will help explain its use so do not worry, or be put off!
Each of the Road Shows will also feature additional special content on the day depending on the venue for subjects that impact those with NS or their families. This will add to the day significantly and for 2020 the Podocyte conference at Manchester University on the 13th of June our annual patient day. These ‘mini days’ should be a great opportunity to get to know each other as well as being informative.
The first Road Show will be in Nottingham on Friday 15th November 10am-3pm and at the venue for our last patient day, the Playhouse Theatre.
Additional Road Shows will take place at Bristol on Thursday 12th March 2020 (World Kidney Day), Birmingham on June 24th-26th 2020 - part of UK Kidney week (people must register for this event!), Glasgow date TBC, Cardiff date TBC and Manchester Saturday 13th June 2020 – This is part of an International researchers ‘Podocyte’ conference. It is hoped the Glasgow Road Show will allow those from Edinburgh, Aberdeen and further to come together. In spring 2021 a Road Show /Patient Day will be held in London at the Evelina Hospital.
Please keep a lookout on the website for dates and more information of Roadshow programmes.
Although NeST works principally with the world leading Bristol research team, the charity is a national charity and seeks to network with hospitals throughout the UK and even overseas. The same of course goes for sufferers and their families. We are all in it together and working together is critical for our goals. That may mean us joining up the dots sometimes to aid communication.
As part of the Wellcome grant application to help with planning, supporting the young ambassadors (who will help present the app) and administration, Mrs Sandie Jenkins has been employed part time. Along with myself and Polly Moseley (who helped with the application and has worked very hard) we hope to ensure this a very worthwhile venture and ultimately improve patient care!
So do note dates now in your diary and watch for updates on the website and please come and offer your input and use the app.
THANKYOU SO MUCH!
With best wishes