Patient and Public Involvement

Patient and Public Involvement

What is patient and public involvement and why is it important?

We collaborate with the patients and the public in a variety of ways. This ranges from patients taking part in our research (for example, by receiving treatment and providing information about their health), to sharing our findings, and collaborating with people as co-researchers, (known as Patient and Public Involvement or PPI).

The National Institute for Health Research defines patient and public involvement as when research is carried out with or by members of the public rather than ‘to’, ‘about’ or for’ them. This means working with patients and the public to plan and carry out research.

The BLISS project has involved patients right from the start. This helps us better understand their needs and what matters most to them.

We do this by:

• Making sure the project considers the practical needs of people affected by myeloma and other blood cancers.
• Ensuring that the information on this website and on the BLISS poster is clear, accurate, and focused on what is most important to patients, their carers, and their families.
• Sharing updates about the project and its findings in a way that is easy for patients, their families, and relevant medical charities to understand.

The BLISS project has eight patient representatives in total. Six of them form our Patient and Public Information and Advisory Group (PPIAG) and two patient representatives sit on our Project Steering Committee (PSC). All our patient representatives have lived experience of a blood cancer such as multiple myeloma.