Stroke Association | Creating a centralised digital platform for group volunteers to connect, access information and share resources.



Why the work is being done

To create an accessible, centralised digital space, where volunteers who run stroke support groups can share resources, experiences and inspiration, as well as access tools and guidance. This work will help maintain and build strong local and national connections for a more resilient stroke group network UK-wide. 

We want to identify the right digital solution that meets the needs identified in the ‘discovery’ (research) stage of this project. 

This work is to: 

  • Define a digital solution 
  • Prototype this solution 

Our research identified a clear and urgent need for a centralised, accessible and interactive digital space for volunteers who run stroke groups. 

They need a space where they can support each other and access the tools, resources and guidance they need to run their groups and build a resilient and sustainable stroke community. 

We know that the solution is digital, but we don’t know what this digital solution is, or what it looks like.  

We also need to investigate how the digital solution might integrate and interact with our existing digital services. It’s these two problems which we seek to find answers to with this funding. 

Our approach is co-production. We believe volunteers should be at the heart of designing an accessible and effective solution. We’ve identified several volunteers who are ready to work with us and to champion this solution to their peers in the wider group community. The solution must be informed by volunteers who are innovating, like Carol from Sussex Stroke Support Virtual Choir.  She is driving forward a partnership with InterAct (stroke charity run by professional actors) and welcoming new members from anywhere in the UK. We want to hear from volunteers who are struggling to lead remote groups too, understanding what content will help to inspire, motivate and support them as group leaders.

This project is part of the Catalyst and The National Lottery Community Fund COVID-19 Digital Response funding initiative; a partnership between The National Lottery Community Fund and CAST, supported by the Catalyst network.

Problem to solve

Last year, our 221 stroke clubs supported >4,400 members. Covid means remote support is vital. 

Volunteers are the bedrock of our stroke group network, but discovery work undertaken found that our volunteers are struggling to support their members remotely. Volunteers running stroke groups tell us they struggle with motivation, ideas and sufficient support. 

Our most pressing challenge right now is to support  volunteers so that they feel equipped and confident to run stroke groups - both online and face-to-face when the latter resumes - and to reach out to new members. We need a digital space for volunteers to interact, share experiences and access resources so they can build a resilient and sustainable stroke community, ensuring no one is alone on their journey of recovery after stroke. 

“I was exhausted facilitating the group online” Carol from Sussex Stroke Support Virtual Choir told us. We connected her with stroke charity InterAct with positive results: “I actually got something out of the group myself, rather than just feeling exhausted.”

Who are the users and what do they need to do

User needs statements: 
As a group volunteer I need/want: 

  • A space online where I can connect with other group leads to share experience/advice on things like online activities, guest speakers, disability friendly venues and transport.  
  • A platform that is user friendly and accessible so that I am not excluded because of my fatigue/ aphasia/ memory problems or limited digital skills. 
  • To be able to access this platform 24/7 so that I can get information when I need it.  
  • Access to things like quizzes, games and activities created by my peers so that I have more time to run my group.
  • To be able to connect with others with shared experiences of the pressures of running a group so that I can learn better coping strategies.
  • To share and access resources that will enable me to deliver and facilitate peer support online so that our members are not as isolated.
  • To feel inspired to try new things and explore new opportunities so that I can learn what works well for my group from others who have tried it.

As a member of SA staff I need/want: 

  • A platform I can signpost group leads to so that they themselves can facilitate connections, learn from one another and share resources.  
  • A platform that meets the accessibility needs of  volunteers and is designed by the people who will benefit from it.  
  • A platform that is also accessible to me as a staff member and intuitive to use.
  • A place that we as staff and volunteers  can easily upload content, e.g. guidelines, videos so that sharing resources is less difficult.  
  • To reduce volunteer dependency and avoid duplication of efforts so that are time can be used in more innovative ways. 

Key Outcomes/Outputs/Deliverables:
  • By the end of this project we hope to have a clear design and prototype for the format the hub will take, the content it will need to hold, the functional requirements and the technological dependencies on our existing platforms.
  • We will have the information we need to complete a technical specification document and engage a partner, if required, to build the hub.
  • We will have a clear view of the technology needed and how it will integrate into our existing digital offerings
  • We will understand what training materials and communications will best support the use and uptake of the hub.
  • We will know what success looks like and how we wish to measure success.
  • We will have a design for the user journey and lo-fi prototypes of key user interfaces.

Key project resources