Ascelus Service User Advisory Group

We are excited to be involved in the Ascelus research project, a new project focusing on  developing and testing a new way of supporting people who have certain blood disorders to monitor their condition. The new approach will involve most patients in using a smartphone and/or a computer.

To help make sure the new approach is useful for as many people as possible, the research is aiming to set up an Advisory Group of about 4-5 people who are living with one of these blood disorders.

We want to recruit people with sickle cell from London, the South East and Yorkshire, who are not very comfortable with using online websites or smartphone apps.

What is the research about?

The research is about a new way of helping patients manage blood disorders that is called Ascelus. This uses the internet or a smartphone to link patients to hospital staff who are involved in their healthcare

We want to find out how Ascelus can include patients who may not feel entirely comfortable with using digital communication to assist in managing their health condition.

What will the advisory group do?

Group members will discuss their experience of using the internet and smartphones and any problems – such as understanding what to do or the costs involved.

They will also meet with people involved in the research to hear about what they are doing and to influence how they can make Ascelus as easy to use as possible

What to expect

• 3-4 meetings a year to make recommendations for the research
• Reimbursement for your expenses and time
• Training and personal development opportunities
• Opportunities to be involved in other activities linked to the research

If you are interested in being involved and joining the advisory group, or just looking to learn more, please email us on info@sicklecellsociety.org