NMO Resources App – How Was It Created?
Patient charities and organisations grow and develop
You don’t often find books from patient charities and organisations about how they grow and develop. Victoria Jackson co-founded the Guthy-Jackson Charitable Foundation in 2008 when her daughter was first diagnosed with Neuromyelitis Optica (NMO), a rare, life-threatening autoimmune disease.
By 2015 the foundation launched their app `NMO resources’. In their book, blogs, and website, the foundation reflect on why and how they created the app.
Step 1: Identify a need and trigger for the app
Looking back on the app’s creation, like many rare disease groups, the foundation embraced technology as a way to unite a scattered community of patients and carers:
“When the foundation was first formed, information regarding NMO was practically non-existent. Through the use of the Web, the foundation sought to connect the disparate groups of advocates and stakeholders in NMO, giving them a common ground to explore information and share ideas. The foundation continues to embrace technology as a means to inform, educate, and support all sides of the NMO community…”
The foundation says that the catalyst for the app started with a key clinical milestone. The development of new diagnostic criteria in 2015 meant that there needed to be an effective way to share this information.
A project was set up to create a paper-based Diagnostic Criteria Pocket Card. Although pocket cards are a common format for doctors, they also recognised the need to share this information digitally.
Step 2: Set up a user group
Consultation with stakeholders led not only to an expansion of the app well beyond the original scope of the diagnosis cards, but also a wider recognition of the needs of this rare disease community:
“…we reached out to both the medical and the advocate communities to discuss how current needs could be met and develop a program of beta testers. These supporters of the project raised awareness for everything from usability in the clinic to accessibility for people with impaired vision. Their vision helped expand the app from a simple diagnostic support tool to a digital pocket guide containing everything NMO.” – Guthy-Jackson Charitable Foundation
Step 3: Refine a clear vision for the app
The foundation’s co-founder and head, Victoria Jackson saw an app as the next stage of the organisation’s resources. Writing about the decision for the app in her book `The Power of rare: a blueprint for a medical revolution’, she identified the gap an app would address:
“We all agreed that we’d developed some powerful resources for NMO patient advocacy, like our website and our NMO motion gateway [patient registry], we needed to make them more accessible. How could we simplify that ability to connect? How could we improve our advocacy toolkit by making information right here at everyone’s fingertips 24/7?” – Victoria Jackson, writing in her book, `The Power of Rare: A blueprint for a medical revolution’
Looking to the future
The app is now available on iphones, ipads and android devices, and publicised through an easy to find page on the foundation’s site. It’s been revised and expanded a number of times, and includes core information on NMO, updates on the latest research and treatments and more than 100 videos.
Find out more about the creation of the app and the work of the US Charity the Guthy-Jackson Charitable Foundation in Victoria Jackson’s book at…
