Going digital: What children and young people with learning disabilities want from a digital health app.

Children and young people with learning disabilities tested the digital health app 'Hear Me Now' to see if and how it could help them better manage their health. This is what they told us.
Two people using a computer

Background

Hertfordshire County Council (HCC) wanted to see if the 'Hear Me Now' app could be a suitable online alternative to the Hertfordshire Purple Folder scheme. This was based on feedback that the hard copy Purple Folder can be impractical to carry with them on a day-to-day basis, largely due to its size and content. More crucially, individuals are only eligible for a Purple Folder when they are 18 years old, meaning that children and young people with learning disabilities didn't have a HCC endorsed tool for managing their health.

What is the Purple Folder? 

The Purple Folder is an initiative in Hertfordshire for people with learning disabilities aged 18 and over. It's a tool which allows people with learning disabilities to record information about their health and wellbeing and to share this with healthcare professionals.

What is the 'Hear Me Now' app?

Hear Me Now is an independently designed digital app, created specifically for people with learning disabilities to support them in managing, recording, sharing and communicating information about their health.

What we did

We worked with Hertfordshire County Council and children and young people with a learning disability, as well as their carers to test the digital health app 'Hear Me Now'. 

For the digital health app to be suitable, we needed to test how independently it could be used, how accessible and intuitive it was to participants; and whether the participants would continue to use it as well as recommend it to others. 

We did this through a series of exercises and one-to-one feedback sessions.

What we found

  • Although the primary purpose of the Hear Me Now app was for users to independently manage, record, and share health information and support needs with healthcare professionals, most participants were not inclined to use the app in this way.
  • Participants preferred to use the app to record personal information such as their hobbies and interests. They also liked how they could customise and personalise the app to express themselves and their identity.
  • All participants required support from their carer to use the app. However, some carers also found the app confusing and counterintuitive at times.
  • Carers of participants who had greater communication needs could se the value in using the app to write notes and record audio and video clips to help their child communicate with healthcare professionals.
  • However, carers and participants did not find it easy to share information with healthcare professionals through the app and were not convinced that clinicians would have the time to learn how to use the app.
  • Carers had concerns about the safety of the app in relation to privacy, security and consent. 
  • Participants found the cost of the app too high and difficult to justify.
  • Most participants and their carers were already using other alternative online tools to help manage their health and health appointments. Participants shared what they liked about these other tools and what they wanted to be better, which was mainly for all the information to be in one place, justifying the need for a health management app. 

What happened next?

Laura Gordon and Andy Lawrence, Joint Chair of Preparing for Adulthood Board said:

"Based on this valuable feedback, the Board has made the decision to promote a range of apps that individuals can choose from depending on their wants and needs in relation to managing health information. Included within this section there will be suitable free apps, such as the NHS app developed in the last year, as well as alternative apps that have a cost, all with the aim of improving health outcomes and independence for individuals with a learning disability."

The full response from the Council can be found in our report below.

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Read the full report and Easy Read version here

Full report
Easy Read report

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