The information provided here is designed to support, not replace, the relationship that exists between a patient or carer and their clinician.
Why is patient and public involvement (PPI) important in BPSU studies?
As there is no contact with patients in studies undertaken by the BPSU, patients and their families may have no knowledge about the research unless investigators engage effectively with patient representatives and the public.
It is ethically important because the studies use anonymised information from medical notes and are undertaken without consent. PPI ensures greater transparency and accountability.
By their nature, rare childhood diseases are often difficult to diagnose and treat, and so families may have a long and difficult journey before a diagnosis. Families should be enabled to obtain the findings from studies which may lead to changes in practice. Therefore, effective dissemination for a lay audience is important.
How is PPI being promoted?
The BPSU Scientific Committee, particularly its lay members, provides support for researchers to facilitate effective PPI, from the start of a study to the dissemination of the findings several years later.
There are several ways in which researchers can engage with patient representatives and the public. The most effective way will depend on factors such as the nature of the condition to be studied and whether there is a support group which can help.
Guidance for researchers
The BPSU has published guidance to help researchers understand how to involve the public in their research - download below.