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

Health Engagement, Health Communications

Objective

A great online experience can create an environment of trust, it can be a safe space for people to connect and can create a sense of belonging for those isolated or with minimal social support. COUCH Health were approached by a top 20 pharmaceutical company who was looking for direction on how to support people affected by early-onset Alzheimer’s. Initially the client wanted COUCH Health to create an app for patients, to be piloted in the UK and then rolled out across key markets, such as USA and Australia.

12
interviewees
1490
responses in 4 weeks
95%
responses in 4 weeks

OUR APPROACH

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.

Results

Interviewees and council members: 12

Survey responses: 1490 in 4 weeks

Some of the key insights that came out of the co-creation exercise:

Information consumption

  • 79% of those involved in the study turned to the internet for advice

 

Most important need

  • Representation of the young who have early-onset Alzheimer’s, as it was disheartening how the disease is portrayed in media
  • 61% were interested in being part of a network of people sharing their experiences. They liked the idea of learning from like-minded people with the same condition as themselves.

 

Look and feel of the platform

  • 79% would like the tone of voice used to be friendly yet informative.
  • 45% mentioned their preference for seeing both illustrations and photos when reading health-related information, as this was considered to make the information both realistic and friendly.
  • We proposed a reconstructed version of the app but brought in accessibility principles that would make the information more user friendly, so the app became a website, with a distinctive and clear offering that provided a simplified user experience.
  • There was a 95% satisfaction rate of visitors who came to the website
  • The content of the platform reflected the needs and priorities of the early-onset Alzheimer’s community.