Patient and public involvement (PPI)

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.

Patient and public involvement is ethically important because BPSU studies use anonymised information from medical notes and are undertaken without consent from the patient. 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 the general public is important.

How is PPI being promoted?

The BPSU Scientific Committee, particularly its patient and public representatives, provide support for researchers to facilitate effective PPI from the start of the 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 relevant to the condition.

Further resources

INVOLVE funded by the National Institute for Health Research (NIHR) to support public involvement in NHS, public health and social care research

INVOLVE Budgeting for involvement practical advice on budgeting for activity involving the public in research studies