BPSU - Patients and the public
The BPSU is committed to ensuring that patient and public involvement is embedded in its work in every way possible. It works with investigators to encourage and support public and patient involvement in their research.
Why is patient and public involvement important?
- 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.
- Ethically it is 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. Families may have a long and difficult journey before a diagnosis can be made. They 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 patient and public involvement being promoted?
The BPSU Executive 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.
Who we are
Public and patient involvement is led by two lay members of the Scientific Committee, Ann Seymour and Sue Banton. If you are interested in applying to become a lay member of the Scientific Committee you can download an application pack.
PPI for researcher toolkit
BPSU has recently lauched a toolkit to help researchers understand how to involve the public in their researcher. It can be download here
Further resources
- Scientific Committee Lay Member Advert
- Scientific Committee Lay Member Application Pack
- Patient and public involvement at the RCPCH
- Bringing research back to families: A personal practice session for paediatricians(PDF, 1MB)
- STEPS Charity
- INVOLVE
- Your health records save lives
- People in Research
- Rare Disease UK
- Route maps for rare conditions toolkit - Genetic Alliance UK
Associated Publications, Resources and Links
- Chairman's Welcome
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