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?

Although BPSU studies do not involve direct contact with patients, it is vital that patients and families are aware of and involved in the research process. Without active engagement, they may have little knowledge of the studies or their impact.

PPI is ethically important because BPSU studies rely on anonymised information from medical notes and are carried out without individual patient consent. Involving patients and the public helps ensure greater transparency, accountability, and trust.

Families affected by rare childhood diseases often face long and difficult journeys before receiving a diagnosis. Sharing the findings of BPSU studies with them is essential, as these results can inform changes in clinical practice, support services, and policy. Effective communication and dissemination of research outcomes to the public therefore form a crucial part of every study.

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