Patient Information Panel

What is the Myeloma UK Patient Information Panel?

Getting the views of patients and families is really important to us.

The Myeloma UK Patient Information Panel is a group of people who have experience of myeloma or a related condition – either as a patient or a family member or friend – and who have volunteered to help us to improve the information that we produce.

The Myeloma UK Patient Information team produces a range of publications and other resources about myeloma and related conditions including AL amyloidosis.

Our information resources are written for people like yourself, who are patients or their family and friends. It is an important part of the development of these resources that we get your views. Involving patients is a key part of producing trusted health information, and is a criterion for the UK-wide quality mark the PIF TICK (Trusted Information Creator) which Myeloma UK holds.

What does the Patient Information Panel do?

The activities the Patient Information Panel vary, and Panel members can get involved with as many or as few as they like. This might include:

• One-off questions and surveys
• Feeding back about new information resources – answering questions such as “Did the resource answer my questions?”, “Was it easy to understand?”, “Was the layout easy to use?”
• New formats and digital tools – feeding back about webpages or videos, or road-testing new tools such as apps

Who can join the Patient Information Panel?

Anyone affected by myeloma or related conditions can join the Panel – you don’t have to have medical knowledge. Our Panel consists of a mix of patients and family members/friends/carers. It can include both newly diagnosed patients and those who were diagnosed longer ago.

How do I volunteer for the Patient Information Panel?

Applications to the Patient Information Panel are currently closed.