noink and Rare disease
18-JANUARY-2019
We are very proud to announce the creation and release of the world’s first MKD (Mevalonate Kinase Deficiency) app.
noink, the flagship platform from UK based software company DSST LIMITED, allows users to track and manage any medical condition. The MKD functionality was released onto the platform recently. By creating this, the noink platform now offers, for the first time, a way for MKD patients to record and monitor their illness in a consistent fashion. You can sign up Here.
"The way technology has been creating health apps is far too silo’d and fragmented" says DSST founder Dr Liam Holohan.
The noink platform allows users to manage ANY medical condition. MKD is simply the first example of the use of this platform to meet the need of the often under-represented rare disease community.
"An ’APP’ is probably a misnomer for what we are doing with here" says Dr Liam Holohan. Health Technology is rife with single condition apps that only serve to fragment patient data further. Single condition is not the reality for patients and most systems completely fail to address the co-morbidity reality that families face not to mention the reality that care is usually a multi person effort.
"We prefer to call what create a ’Condition pack’ that adds to the platform "continues Dr Holohan. We talk to Patients, clinicians and other experts and create a pack that is simply installed by the user. You can have as many conditions or family members as you like on our system.
We starting with the philosophy of multi-user (think family), multi-condition and multi-lingual to produce the next generation of personal health management technology.
Rare diseases by their nature are not economically viable for traditional software development methods. If a rare disease app gets created at all it is usually by a charity or Philanthropist and its reach is therefore limited and its focus too narrow.
To put it in the context of drug discovery Dr Holohan says "Rare diseases may rely on orphan drugs but should not have to rely on orphan apps"
By creating a platform that you configure rather than code means you can address the needs of any condition, no matter how rare.
In proving their philosophy, the company worked with an expert patient group and created within a matter of weeks, not only the first, but also a comprehensive tool for MKD patients everywhere.
Another benefit of the platform is its real-time multilingual nature whereby you can record notes in one language and others such as your doctors can see your data in another language. Having a rare condition is bad enough but we do not want language to add a further barrier to getting the best healthcare possible.