Previously submitted to: JMIR Human Factors (no longer under consideration since Feb 20, 2024)
Date Submitted: Nov 21, 2022
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Development of The Young Onset Parkinson’s Exchange App and Website: A living lab approach
ABSTRACT
Background:
In 2019, Parkinson’s Australia was awarded over $1 million from the Australian Government National Disability Insurance Agency (NDIA), to improve outcomes for people with Parkinson’s diagnosed under the age of 65. At this time, evidence from people with young onset Parkinson’s suggested a lack of information, education and understanding of the condition, symptoms, progression and supports to allow for social, community and economic participation. More than 250 individual stories and experiences from people with young onset Parkinson’s shaped all tools and resources for the YOP-X app and website, including employment, sex and relationships, mental health, exercise and nutrition, sleep and neuroplasticity.
Objective:
The co-creation of Young Onset Parkinson’s Exchange (YOP-X) app and website using living lab approach to embody the experiences, ideas, knowledge and daily needs of people with young onset Parkinson’s underpinning all app and website content.
Methods:
Taking inspiration from living lab philosophy, multiple stakeholders were involved in the co-creation of the Young Onset Parkinson’s Exchange (YOP-X) app and website. This paper presents the usability study and Google Analytics component of the project. At project commencement, COVID pandemic restrictions were implemented for the first time in Australia, requiring the project and evaluation team to look at new ways for the app prototype to be tested. This led to the first usability study conducted with people with young onset Parkinson’s using an entirely online platform via Zoom, and on an application specifically designed for them. A Google Analytics property was also integrated with the YOP-X app and was used to source app usage data.
Results:
It was found that the app could retain an active userbase of new and returning users and had an average monthly retention rate of 53%. It also displayed a MAU (monthly active users) value of 444, a WAU (weekly active users) value of 123, and a DAU (daily active users) value of 21.
Conclusions:
The COVID-19 pandemic presented unanticipated opportunity to innovate; as demonstrated in the usability testing, the app and website was able to successfully validate the user acceptance, user-friendliness and design aesthetics of the Young Onset Parkinson’s Exchange app. Clinical Trial: Not applicable
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