Co-creating a digital support platform with the early-onset Alzheimer’s community

The Health Engagement team here at COUCH Health started off the strategy development by interviewing potential users, so those with early-onset Alzheimer’s and their family/care givers. The aim of the interviews was to identify their views and preferences on information consumption and the proposed platform concept.

This was a crucial step in the process, as the output from the interviews revealed that an app was not appropriate and would not meet the needs of patients or caregivers. Instead, we learned that a website would be more beneficial. The interviewees became the core council for the platform and advised on development for the next year.

Next steps for COUCH Health were to work with the council to co-create a quantitative survey to gather further insights from a wider group of people living with early-onset Alzheimer’s. The survey was designed to understand online habits, information consumption, information needs and gaps, opinions on digital ads in selected online spaces.

The survey was shared with patient and community groups in UK, USA and Australia. Our partners then shared with the survey links with there audience over a 4-week period.

Using the survey and interview insights, COUCH Health developed a strategy for an online community that would provide not only disease awareness, but also practical tips on how to manage stigma and loss of friends, which was a core repeating theme through all of the research.