Patient and public involvement (PPI)

The BPSU is committed to involving patients and the public in its work as effectively as possible.

Why is public involvement in the work of the BPSU important?

• to ensure that the BPSU effectively communicates information about the studies it runs
• although BPSU studies do not directly contact patients, public involvement in the planning, design and dissemination of a study is highly valued
• the BPSU publishes descriptions of the studies in an easy-to-read leaflet format to promote the work to families and the general public

Current PPI Review

• the BPSU is currently undertaking a review of the steps it has taken to develop PPI processes, with the aim of optimising its engagement with patients and the public
• the reports generate by this review can now be downloaded from the evaluation web-page

Who are we?

Two lay members were appointed to the Executive Committee in 2006 to lead the development of patient and public involvement.

• Ann Seymour
• Sue Banton

How is patient and public involvement promoted?

Researchers are encouraged to involve patient support groups and/or carers/patients who have an interest in their study. 

This may include:

• development for the grant application
• design and management of the research
• undertaking the research
• analysis
• dissemination of the research findings

There are different levels of public involvement in BPSU studies:

• consultation: researchers consult members of the public about the research, eg through individual contacts or one-off meetings
• collaboration: this includes active ongoing partnership between researchers and the public, which may include a lay representative of a patient support group, or a carer/ patient who has direct experience of the condition, on the project steering group

Further information

• patient and public involvment at the RCPCH
• STEPS
• INVOLVE
• Rare Disease UK
• People in Research